Cancer Ass (alt titled: The Innocent Importance of Irreverence)

My mother lost her battle with stage 4 Colon Cancer on October 27th, 2000. The road that led to her death was a hellish one that included multiple surgeries. a colostomy bag, chemo, radiation, withdrawal from Duragesic Patches, false remission and metastization...the list goes on and on. 

 However, the worst part of her experience was the way everyone treated her changed so dramatically once she got sick. It wasn’t a deliberate change and it wasn’t negative - everyone was really nice to her. They treated her with kid gloves and kind intentions but her Cancer was always center stage. She wasn't Patty anymore - she was a perpetual patient. Well...maybe for everyone else, but nit for me.

I’ve been blessed with several things in life. Among them is a disturbingly dark sense of humor, which I often employ to help me navigate overwhelming emotions. I’m wildly irreverent - definitely not for everyone - but my mom appreciated it and I loved making her laugh. She had a great laugh: joyful and infectious. Time has stolen my memory of her voice and the way her face looked outside of the pictures I have, but sometimes I can still hear her laughter in my dreams. 

The first time I called her, Cancer Ass, was, loudly, in a very crowded Chemotherapy Center after an infusion. Immediately after, flashing my deepest dimples to the aghast patients and staff, I helped my mother get her coat on. She was having trouble, not because of the chemo, because she was giggling too hard. I immediately joined her, as did...about one third of my unintentional audience. The rest were distinctly unimpressed. Like I said: I’m not for everyone. 

From then on, Cancer Ass became my occasional pet name for her. I inscribed it in books I gave her and wrote it instead of her name on cards and letters I sent. The latter lead her to an interesting interaction with a concerned Postmaster, but that’s another story altogether. ‘Cancer Ass’ made her laugh every time, just one of the many ways she and I laughed at the horrible disease that was stealing her life. The alternative was unimaginable misery. Laughter truly is the best medicine - even if it can’t always save you. 

>>>>> 7 years >>>>>

The day my baby was diagnosed with inoperable ROP, that would eventually take away the little sight he was born with, for a moment, I felt like I would never laugh again. I was, woefully, uneducated. That first day, his diagnosis felt like a death sentence. I couldn’t imagine a world where being blind would be ok for my precious baby boy. 

And then… 

I remembered who the fuck I am. 

I didn't bow down before Cancer. I’d be damned if I did it for a lil’ ole disability. 

As soon as my son was old enough to understand I told him that his eyes were broken. I’ve received backlash from blind adults, who find offense with my terminology. I’m ok with that. My boy was two years old and had a relatively narrow world view. He understood the concept of ‘broken’ as in ‘doesn’t work’. My Not-so-Little Dude is one smart cookie, but the finer points of Retinopathy of Prematurity were a bit beyond him at that point. 

 Soon after that I changed the words of ‘Sweet Child of Mine’ for him. 

 “He’s got eyes that can barely see 

Oh, I can’t tell you what this child means to me 

He is my babe and his smile is bright sun sh-i-i-ine.” 

 You get the point. Right from the get go, we put blindness in its place: in the backseat. 

 Is it there? Yes. 

Does it suck? Kinda. 

Does it get to make important decisions?  Oh, my stars. Heavens. no. 

Are we going to treat it with any kind of respect? What the fuck do you think? 

Once, when Gabriel was 4ish, I asked him to hand me the blue towel. Upon realizing my mistake, we laughed and laughed. After the laughter, we had a good discussion about colors (which he couldn;t really understand - never having seen them) interwoven with facts (the sky is blue), emotion (generally speaking, blue is a cool, calming color), science (blue is a primary color and copper chloride makes fireworks blue), psychology (the blues is a casual term for sadness or depression) and pop culture (Dude...B.B.King). My sweet child might not be able to pull up the visual for ‘the color blue’ but he gets it. He really does. 

Since then, we’ve laughed in the face of everything: bullies, bitchy teachers, broken bones...all of it.

The result: not only is my kid, wickedly funny he’s comfortable with who he is. He’s comfortable with his disability. Obviously, it’s not ideal, but sometimes it just is what it is. You gotta play with the hand you’re dealt. Everyone gets a choice: you can laugh, or you can cry. 

I know what I prefer.

Asshats

Hello, hello! Did you guys ever notice that I say I'm going to write another blog post right away and then suddenly a year-and-a-half slips by? What can I say? I guess I run on Caribbean Standard Time these days.

Meanwhile, Little Dude grew about a foot taller and taught himself how to speak conversational Korean. He's also had his phone read him my blog and I'm so relieved that he likes it. I was always a little bit worried that he would consider it a violation of his privacy, but Gabriel has no problem with me telling our tales. We've actually recently taken our tricks to Instagram.

Like most of today’s youth, Gabriel is completely obsessed both with technology and the internet. He's also fallen in love with YouTube and would very much like to start making videos. I told him that it might be beneficial if we made a video talking about his blindness and he said, “Naw. I only let people I trust know I'm blind.”

What??????

It's not often that I'm rendered speechless but at that moment I was floored. His eyes are, quite literally, made of plastic how on Earth does he think he can pass for a sighted person?

 I changed the subject and let it drop but I was a little concerned that maybe Gabriel isn’t as well adjust did to his disability as I thought he was. However, the next day the universe revealed its answers to me - as it will if you're paying attention. Let me enlighten you.

I helped Gabriel learn to echolocate when he was a toddler and when he got a little older he hated his cane. Me, being arrogant, decided that technology would come up with something much better than that stick one day, so I’ve never forced him to use it all the time. I was also happy to encourage him to learn to rely on his other senses to help him navigate his way through the world. He mainly only uses his stick when he's on his own. When he's with me, he usually 'freestyles’.

 It’s a double edged sword - that cane of his. On one hand, it’s the current accessibility tool to beat for blind ambulation; on the other hand, it’s an imperfect tool. It misses all sorts of things that are above ground level.

Any way, to make a long story short (I’m lying. I have no idea how to do that.) I realized that I might have been doing my son a disservice by being lax on his mobility training so, to the tune of much complaining, I’ve been forcing him to bring his stick to places where - in the past - I would have let him freestyle.

HOLY SHIT!!!

The way people treat my son when he’s carrying his white badge of blindness, vs. the way they treat him when he doesn’t, is remarkable. Heartbreakingly remarkable.

Without his cane, my son is Gabriel. A vibrant, funny little boy who never quite looks you in the eye. Usually, by the time people figure out that he’s blind, they’ve been bowled over by his charming personality. If they have any comments at all, it’s usually a polite (albeit occasionally nosey) inquiry as to the nature of his disability.

With his cane, my son is instantly reduced to his limitations. People dehumanize him the second they see him.

“Oh, my God! The poor thing.” said in tones of deepest sorrow.  
“What happened to him?” as if he isn’t standing right there.  
“Will they ever be able to save him?” with a furrowed brow and hand on heart.

That last one (heard multiple times from people who should know better) is the one that makes me feel the most stabby.

Listen up, People: my son doesn’t need saving and he doesn’t need your pointless pity. He needs understanding and compassion. He needs education, advocacy and inclusion. He needs basic human dignity. He deserves the same baseline respect that every able bodied person takes for granted.

I get it you, guys I really do. Interacting with someone with a disability can be a little dicey - especially if your contact with the disabled is limited.

Here’s a good rule of thumb: don’t be an asshat.

A hat for an ass (either variety) is completely useless. As are all of the statements I’ve listed above. I’m working on some guidelines for interacting with the blind here in a post I creatively titled: A Beginners Guide to Interacting with the Blind.

Since I’m not blind myself, I can only understand disability through my son’s eyes. (How’s that for irony?) However, I can understand his plight better than most, since I bear witness to the atrocious things people say to him. The worst part of my son’s disability isn’t the fact that he can’t see. It’s the reactions he gets from all the people who can. He has enough challenges living his life in a world that wasn’t designed for him in mind - the last thing he needs is an asshat. He needs a world where he feels safe coming out as blind and it’s up to all of you to give it to him.

The Middle of the End: Easy Skankin' with Ivo

When you are a person who sincerely believes you will never have a child, you develop very different expectations from life then somebody who plans to have a child.

The young woman who came to Aruba was going to sail around the world writing words and drinking rum like a pirate version of Hemingway with messed-up ovaries. The woman who writes these words today wouldn't trade her life for anything but she had to grow up real quick in order to become a mother. 

Having a child that you didn't plan on having can test a relationship. Having an special needs child can either cement a couple together or it can be the kiss of death.  Gabriel’s father, Ivo, and I didn’t make it.  We started drifting apart when Gabriel was a toddler.  There was a point where we just both realized we’d become too different to stay together. It was a little ugly before it was all over.

However, I grew up with parents who didn't get along.  I frequently found myself in the middle of their power plays and head games - not a fun way to spend childhood. I wanted better for my son.  

I’m proud to say that Ivo and I have managed to forge a significant friendship with each other over the years.  It hasn't always been easy, but being a parent isn't about doing what's easy.  It's about doing the best thing for your child.  If you hate your co-parent, it's essentially the same thing as hating one of the most significant people in your child's life.

Not everyone can make it work like my baby daddy and I did, but you should try your best to respect your child's feelings and keep your own out of the mix as much as possible.

*puts away soap box*

Now, for something completely different!!  Da-da-da-dum!!!

 I've been working on a little project I like to call:

“Unresearched and Most Likely Improperly Formatted  (I just glanced at a page from ‘Empire Strikes Back’ and decided to write a)  Screenplay” or:

The Middle of the End

Scene 1 - Easy Skanking with Ivo

The camera pans in from an overview of the island of Aruba to the dimly lit parking lot of a Bar/Supermarket called The Golden Buddha.

Interior of a battered work van – Continuous

A man (Ivo) and a woman (Stacy) sit in the front seat of the van.  The woman traces a fingertip through the concrete dust that covers the tiny ‘September 2011’ page of the calendar stuck to the cracked dashboard of the work van.  Her nails are bitten to the quick and her movements are nervous, slightly erratic.  The man’s eyes are fixed on the steering wheel.  The van windows are open as they both smoke cigarettes.  The bar is busy and every time the door opens snatches of Bob Marley’s ‘I Shot the Sheriff’ slip into the unnatural silence in the van.

A tear slides down the woman's face and you see flashbacks of her past with the man in the van.

FADE INTO A QUICK PACED ARRAY OF FUZZ EDGED MEMORIES -

Driving around in that van in the deepest night, with her hair streaming out the open window, an open beer in her hand while she sings along with the radio, him behind the wheel.

Piling in with another couple after watching Lucky Dube play for the very last time in Aruba.

The day she sat beside him with disbelief in her heart and several unopened pregnancy tests in a bag from the pharmacy.

Him snarking at her as she grinds the clutch, trying to learn how to drive a stick shift in the parking lot of the hospital, because she just can’t get it right and he’s exhausted from working all day then taking her to visit their premature baby every night.

Grabbing his phone when he steps out of the car and reading messages that say “te amo” from a contact called ‘mi corazon’ with a number out of Venezuela while a chubby infant tries to aspirate his toes in the car seat beside her.  Raising a skeptical eyebrow when he returns to the van and insists the contact is only a dear friend.  Running a finger down her baby's cheek while she bites her bottom lip hard.

Threatening to get another boyfriend if he didn't start paying attention to her.

Getting another boyfriend.

Screaming - like a wild woman, from the doorway of a dilapidated apartment - that if he drove away, that she wouldn’t be there when he returned.  And then watching dust billow behind the tires as he drove away before she walked back inside, sobbing.   Music plays faintly from the computer.  Hailey’s asking why mommy was always crying. An adorable 4 year toddles blindly to her, old hugs her and asked her if Marshal Mathers wrote that song for her.  She hugs her baby back, spins him around and promises that it will be ok, She dries her tears and starts packing their things…..

But I did not shoot the deputy…no, no, no!

The music pulls the woman out of her silent reverie and she looks at the man. It’s the first time she’s seen him in a while.  He reluctantly returns her gaze.

             IVO (spitefully)

How’s your boyfriend?

             STACY (eating ALL SORTS of crow)

He is very good to Gabriel and I.  Gabriel’s fine, too by the way.  He misses you.

             IVO (in a flash his anger fades to sadness)

How could you leave me?

             STACY (her faces mimics his but in reverse)

I think the real question is how could you have cheated on me with a hooker in Venuela?? Really, Motherfucker?  A hooker??

             She takes a deep breath and cuts him off before he can lie to her again.

              STACY

You know what, Ivo. It’s not your fault.  You didn’t sign up for another kid.

FADE INTO DREAM SEQUENCE -

A hazy vision shows Ivo and Stacy gliding along smooth seas on small sailboat.  Ivo is deep sea fishing off the stern while Stacy writes in a spiral bound 5 subject notebook – one deeply tanned and tattooed ankle holding the tiny wheel at the helm steady.  Bob Marley is the only unnatural sound around, quickly lost as their guiding wind slices the bow of their boat through gentle waves.

The dream dissipates and is replaced with a crystal clear image of a happy toddler with a halo of curls and sightless eyes laughing.

Interior VAN

             IVO (gets out of the car without a word, goes into the bar and returns a moment later with two open bottles of Polar Beer. He hands her one and they clink their bottle necks together in an automatic, familiar way.

             STACY

We’ve always been better friends than anything else, you know.  

             IVO (looks like he wants to argue but then sighs)

And Shnook?

             STACY (smiles at her son's baby nickname)
He's good. But he misses you.

             IVO
I've been -

             STACY (cutting him off in a slightly bitter voice)
Busy.  I know.  You always are. 

             IVO

You’re so good with him.  And teaching him all the….   (his voice trails off and he waves a hand vaguely)

             STACY

Teaching him how to be blind.  You can say it, dude.

          
              IVO

What happens now?

             STACY

We are going to be friends.  The very best.  All that matters is Gabriel.  I know that things are rough for you right now, you help me when you can but I can manage.

             IVO

If you need any-

             STACY (cuts him off with a gentle touch on the arm)

You’ll be the first I call. 

             (They share and awkward embrace)

The camera focuses on the calendar, then pans out cuts away from the van and fades into memories hazy, eged memory scenes – marked by calendar pages from the work van:

October 2011

Aruba

Stacy, a tall fellow and two adorable children a golden haired boy of 8 and a gorgeous strawberry blond 11 year old girl play with a dark-haired, angel faced boy with messed-up eyes who toddles, blindly through a sandy yard as reggae music fills a beautiful Aruba sunset.

February 2012

Union, New Jersey USA

Stacy is in the Social Security office filling out Disability paperwork for her son. Gabriel now has short dark hair and is a little bigger now. He sits besides, her smiling sweetly in the general direction of the woman helping them.

April 2012

University Hospital - Newark, New Jersey USA

Stacy is anxiously pacing in a waiting room as her sedated child is having his eyes examined. She wrings her hands as she paces back and forth.  A doctor walks over to her.  His eyes speak volumes.  He doesn’t have to say a word to crush her last, best hope.  Even in America, there is nothing that can be done to save her baby's eyes.

Interior of Van 

The dashboard calendar is as dusty as ever and reads May 2012.  The driver’s door opens and Ivo returns and hands Stacy a pack of cigarettes. She thanks him, opens it immediately and offers him one.  Once they each have lit cigarettes Ivo stares at Stacy.  She reluctantly looks back.

                   IVO

Nothing?  They can do nothing?

                   STACY

No.  It’s just like they said here. The eye has to go.  It’s not growing properly, it causing him pain every day -

Her voice cracks and she presses her hands against her eyes to stop tears that are already coming.  Ivo turns and stares out the window. 

                   IVO

So what now?

                 STACY (sniffles)

We take him to Colombia.  You’ll have to come.  I can’t manage that by myself.

                  IVO

Yeah...your Spanish is terrible.

                STACY

My everything-except-English is terrible.

They both laugh.

                IVO

What about your boyfriend?  

              STACY

He’s just going to have to deal. He's cool. Your girlfriend?

               IVO

She's not really cool but Gabriel comes first.  She is not going to like it though…

He rolls his eyes and shakes his head dramatically.  

The camera pans out to sound of laughter.  The van gets smaller until it’s just a speck that gets lost on a bigger speck that’s quickly lost in the deep blue water of the ocean.

End Scene

The Beginning of the End

 There are two kinds of human pregnancies in the world today: planned and unplanned. The category of unplanned pregnancy can be further broken down into wanted and unwanted. Being unplanned and unwanted is one of the worst fates that could ever befall a child.* My Little Dude is a lucky kid. He falls into the interesting subcategory of being unplanned but miraculously wanted.

Eleven years ago today, I had my face mask covered nose pressed against the plexiglas wall of my infant son’s incubator. It was surreal. I’d spent 5 years of my life believing that I would never have a child. Then I got knocked-up. It was so nuts! Unbelievable! A little scary! Honestly, not great timing! But… holy shit I get to be a mom! Then I hit a snag and delivered in my 32^nd week.

I’ll never forget how I felt the first time I saw my child’s face. To this day I can't describe it. I couldn't hold his terrifyingly small body.  Machines were breathing for him.  Tubes were feeding him.  The heart monitor pad took up 85% of his little chest but...the worst part were the nurse's faces.  Like his doctor, they couldn't meet my eyes.  They thought my miracle was going to die.

An icy vise gripped my heart and fear rolled off of me in waves as I stood there memorizing every feature of my sons face while his doctor’s warning, about how critical the first 72 hours of my son’s life are, was blaring through my head like an air raid siren. I knew his name was Gabriel but I refused to say it out loud because it felt too much like a jinx; something to put on a tiny tombstone.

In the worst moment of my despair, I wondered if God was mocking me by threatening to take away the child I had already spent five years mourning, but then I had an epiphany. Maybe God IS love. So I started telling my son how much I love him.

I told him things about myself that I'd never told anyone before. I told him that when I was a little girl I never dreamed of being a bride because my parents marriage didn’t make the practice seem even remotely desirable; but I’d had a Cabbage Patch doll called Catherine that I loved all throughout my childhood. I told him how much I’d always wanted to be his mom and how sad I was, during those years I thought I’d end up being a lonely lady with a bunch of cats when I got old. I told him all sorts of things that night, but mostly I told him how much I love him.

My son survived. I got to bring him home.

I’ve never forgotten to be grateful for that. The foundation of my motherhood experience is based in love and gratitude and I think that simple fact has been more significant in my son’s development than anything else.

Occasionally I’ll get a compliment regarding my mothering skills. I usually defer the compliment by saying that Gabriel makes it easy to be a good mom and that is very true. He’s always been such a happy, sweet kid and I think a big part of that comes from the fact that he had a very happy sweet babyhood.

Looking back, the only thing I might do differently is put him into a play group or something – for the socialization aspect. Kindergarten was rough for my Little Dude and he has a hard time relating to kids his own age. On occasion he refers to his classmates as ‘uncivilized heathens’.  Maybe if he’d been around children more when he was younger he’d have an easier time relating to them now; or, maybe my 11 year old just has the soul of a wizened old man with limited patience for unpredictability. It’s hard to say.

As the mother of a special needs child, I’ve enjoyed a privilege that isn’t offered to everyone, these days. I was allowed to be a proud stay-at-home mom. Until Gabriel was in the first grade, I was able to spend every day with my son teaching him how to be a person – a blind one at that.  People congratulated me for it, marveled at how well Gabriel was always doing. Working mother’s never said snide things to me. “It’s so sweet that you stay home. I could never do it I’d be SO bored!”  They said sincere things like, "I could never do what you do"

I used every moment of that time to teach him everything I could; from mobility to Mozart. Every day I remind him how ferociously that I love him. It became our battle cry as he got older. Young children need to learn ‘object permanence’. This means that things stay where they are even when you aren’t looking at them and things that move that are constants in your world might go away, but they return. Something like that… my last Psychology class was 100 years ago.

Blind kids need that same reassurance and it’s more difficult to provide, I read that in a book when Gabriel was a baby. From that day forward, in his infancy, I’d toss an ‘I love you’ or ‘You got some cute ass toes there, homie’ his way – periodically - to reassure him I hadn’t vanished. I think I also wrote a post about how when he a baby/toddler I painted the world for him with words. It was a lot of talking. So, so many talkings…

As he started becoming a ‘good talker’ and interacting with me, if I was quiet for long periods of time, sometimes this would happen:

G: Mom, are you there?

Me: some variation of yes. Anything from ‘yes’ to ‘you bet your britches I am!’

G: I love you.

Me: I love you.

Over the years that interaction became:

G: Mom? I love you.

Me: I love you.

These days it’s more like:

G: Ma?

Me: Yeah?

G: I’m hungry.

Me: Again? Are you sh*tting me?

I tried really hard not to spoil him (a feat made easy by the fact that his father and I were dead broke at that time^) and I always treated his disability with a casual attitude. I will forever be grateful for all of that time I had to love my son, I think it made all the difference in his development. He might have grown up in the dark, but he was basking in the light of love.

Adolescence is roaring upon us now and I’ve stepped back a bit. I’m letting Gabriel’s father have a more active role in his son’s life now that he’s a bit older and I’ve got my eye on the future. I’ve got a few more things that I want to tell you and then I’m going to abandon this blog. Well, as much as you can abandon something that’s linked to your Google.

Being the mother of a blind child, has made me into the woman I am; but that facet of my life no longer has to be the center. These days I just think of myself as ‘mom’ and the people who bolster me up in life are encouraging me to become ‘writer mom’ and I’m going for it.

If you’d like to keep up with my latest projects you can check out the quarterly magazine H&H Aruba online or follow the ‘Profiles in Excellence’ series on the University of Aruba’s Facebook page. Some of you reading these words right now have been with us, in the darkness, since the beginning. Some of you have become my friends (you know who you are) and for that I am grateful.   

Love.

That’s the primary thing you should take away from all these words that fill these pages I’ve written here.. The more you can genuinely shower your children with love and affection, the better they will grow.

Regardless of their abilities, disabilities, if they remind you of your ex (that you freaking hate) when they smile or if they display the worst parts of yourself, your primary job as a parent is to teach your child to feel safe and secure knowing that they are loved and wanted.  Children who have a safe place to grow their roots, grow best.

Also know that YOU are loved and wanted, my Dear Readers.  The comments on these pages will find me.  If I can offer advice, be a sounding board or if you just want to reach out and not feel alone, please do so.  I’ll respond to you on Caribbean Standard Time.**

Stay tuned, my lovelies. My next post might come sooner than you think.  

~S

  

* I believe that when children are treated like burdens instead of treasures, it has a very negative effect on the way they perceive themselves.

^ No joke. We ate eggs for dinner every night during Gabriel’s 3rd and 4th months of life because money was crazy tight and diapers and formula are expensive. After that month, I didn’t eat an egg again for 7 years.

** Anywhere from 2 weeks to 4 years. Give or take. Maybe longer if I get distracted by something shiny or they invent a new flavor of ice cream.

Out of the Dark

Lately I’ve been thinking deep thoughts about something that will concern my son in the years to come. Ableism. Ableism, in a nutshell, is discrimination in favor of able bodied people.  However unlike all of the other -isms, Ableism is a little bit tricky to define.  

For example, if I were to say that all white people are lazy and bad at math that would be racism. 

If I said that men can never find things around the house (even when said thing is, quite literally, 2 inches from their heads) that would be sexism.

However, if I said that my blind son will never be a heart surgeon – is that Ableism or is it realism? 

As far as I can see it, the other –isms exist to support groups of people who have been oppressed in some way.  They serve to remind us that we are all equal. Black – white – man –woman… despite variations in our skin tones and private pink bits we are all deserve to be treated exactly the same.  It’s only fair, right?

Now we have my son. He has never had any useful sight. A long, long time ago he had enough light perception to tell a window from a wall but now his eyes are made of plastic.

What the fuck is fair about that?

And as far as equal goes, aside from the fact that he can’t see, my son is superior to me in every possible way.  Until you’ve hung out with a blind person you really can’t grasp the extent of the ‘spidey senses’ the sightless posses.  My Little Dude hears variations in music and accents that I don’t hear at all.  His memory is a thing of beauty.  Television doesn’t entertain him much so he teaches himself Korean in his spare time. That's on top of the 4 other languages he speaks. 

I could go on, but you get the point.  My son's lack of sight gives him unique qualities - he is not my equal – he is very different from me.  He’s got such a bright future ahead of him; however there are realistic limits to what he will be able (and legally allowed) to do in this life.

My son's automobile obsession is legend in some parts of the world.  The most heartbreaking conversation I’ve had in my whole life went like this, with my 5 year old son, as he was riding a Tonka Truck down a hallway in a hotel in Cali, Columbia. It was in the week leading up to his first surgical procedure – the one where they took his left eye.

Gabriel (speeding down the hall*): Mom! Look at me!  I’m going to be a race car driver one day!!

Me (massaging my heart but in a sing-song tone):  No you ain’t!  No one’s gonna hire a blind guy to drive their car, you silly old thing!

Gabriel (in a 5 year old moment of reckoning): What do you mean, Mommy?

Me (headed for the minibar in the room):  Well, baby. You know your eyes are broken.  And in a couple of days they’re going to take that one that hurts you all the time and replace it with a special lens.  You are never going to see and blind people aren’t allowed to drive cars because it’s dangerous to drive when you can’t see the road.

Gabriel had stopped driving his car by then and was very quiet for a long while.  I was uncharacteristically solemn.  I didn’t crack a joke, or try and get a giggle out of him.  It was a very heavy moment.  It almost killed me but it was the best thing I’ve ever done.  I can honestly say that I have never given my child one shred of false hope.  Years from now - when he’s cruising around in his Google car or looking’ around with his iEyes - I’ll be laughing with delight while I talk about how wrong I always was.  I will joyfully eat every single one of my ableistic words.  If those things don't happen for him, well...it ain't no big thang.

As you can imagine, people with disabilities might take against my opinion on this matter.  I’m ok with that. My opinions have inspired some lively debates from some of the blind members of the Parents of V.I. Kids support groups.  In one such debate, a blind individual brought up the fact that it’s unfair to tell blind children about the things that they can’t do, because some parents let their sighted children have wild, unrealistic fantasies.  I believe the example was of a blind child was told that he couldn’t be a soldier while that child’s sighted brother was supported in his desire to peruse a career as a Christmas elf.  Whaaaat?  I guess I’m just too realistic for such whimsical parenting.

I don’t want my son to spend one unnecessary moment wishing for things he can never have.  If he had low intelligence, I wouldn’t encourage him to be a rocket scientist. If he was fugly I wouldn't encourage him to be an underwear model.  You gotta play to your strengths.

I started this blog while Gabriel and I were flying home from Cali after that first surgery.  Not only did he lose an eye, he lost a little of his innocence.  He experienced physical pain I can’t even imagine and he also began to realize that being blind is kind of a big deal.  I’d always told him that his eyes were broken and almost everyone else could see, but he didn’t have a clear concept that that would affect his life until I crushed his race car driving dreams.  It was very sad but I’d do it again in a heartbeat. #NoRegrets

On the flip side of that coin - let’s be honest - there definite perks to being blind.  Gabriel gets way more attention than his sighted peers.  He got to play drums with a band onstage at his 7^th birthday party and then they invited him back anytime he wanted to play.  Was it because he’s that good? Little bit.  Was it also because people throw serious coin in the tip jar when a little blind kid is rocking the sticks?  Come on’ son!

And you know what??  I want that for him and so much more.

I refuse to treat my son like a blind person but I secretly hope that every other person he encounters in his life will be extra nice to him – just because he’s blind.  I hope he’ll be offered bus seats and friendly hands to help him when he needs it.  I actually hope that in the future he lives in a world where he has the luxury of getting annoyed because too many nice people try to help him.  I want him to skip to the head of the line and get extra ice cream and get to meet Stevie Wonder just because they’re both blind dudes.  I want those things for him because it seems like that cosmically balances how much it must suck to be 5 years old and realize that the law will not allow you to drive a standard car.  I don’t tell my boy that, though. I am trying to teach him to be as fiercely independent as he can be.  I do remind him how strong he is though. In my humble opinion, thriving with a disability is not for the faint of heart.

Speaking of fainting hearts, be still yours my beloved, loyal readers.  I am about to do something that I swore I’d never do, I'm going to invite you to step out of the dark.  Not-so-Little Dude and I have decided to take our tricks to the interwebs.  I’ve recently received some very kind messages from my fellow parents.  Someone out there thinks I’m inspirational. Another person likes my style and last (but certainly not least) I received a lovely message from a mother who just learned her 6 month old infant will never see his first birthday cake.  She found my blog and I got to tell her that it’s going to be ok and helped her feel a little bit better.  That’s all I’ve ever wanted. Until now... 

The adoration of (not two but) three people has filled me with the heady intoxication of being an internet sensation and I want more.  Come and find Gabriel and I on Instagram. Just follow this link: https://www.instagram.com/lend_me_your_eye/ 

That’s a figurative account name so don’t be sending us your prosthetic lenses in the mail – my little dude has his own baby blues.  And now you can see them for yourself. 

All arguments about ableism aside, I might not be able to change the way our kids see the world, but I will do my very best to change the way the world sees our children.

 

Eleven

Gabriel Maduro

The first bedroom on the right

Noord, Aruba

Dear Mr. Maduro,

I regretfully inform you that you have not been accepted to Hogwarts School of Witchcraft and Wizardry for one reason alone; Hogwarts does not exist because there is no such thing as the magic that JK Rowlings writes about. By now you know that there are no spells that will turn your boogers into bats or shrink your front two teeth.  You can’t regrow bones overnight, go back in time or cheat death by having the most powerful wand in the world. 

However, if there were a Hogwarts your name would have been written down the day you were born.  Your entire existence is magical to me.  You are the child that I thought I’d never get to have.  You are the boy who lived through the night when the doctors didn’t think you would.  Helping you ‘see’ has changed my view of the world for the better, just like being your mother has changed me for the better. 

I know things aren’t always easy for you.  I know how you struggle to do things that come easily to others, that you sometimes feel left out, that other kids can sometimes be so mean.  I know it’s hard and frustrating and that you secretly wish that there was a magic spell that could fix your eyes but - my darling boy - I also know how very special you are.

I can never tell where blindness ends and my boy begins because being blind is more than a physical characteristic it’s part of who you are.  Maybe if you could see you wouldn’t have an absolute ear for music, maybe you wouldn’t be able to fluently speak 4 languages, maybe you’d be more interested in running around than having meaningful conversations with people, maybe you wouldn’t be you and I love you more that I could ever say.

On this, your 11^th birthday, there is no letter coming from Albus Dumbledore but if there was it would tell you that you are a smart, funny, charming fellow and that life has magical things in store for you.  Stay the course, be brave and never forget that you have a small army of people who absolutely adore you and will be cheering you on. You are so very loved and that’s the best magic there is.

 Love, your Mostly Muggle Mom