Thursday, February 15, 2018

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 11th 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





Friday, October 13, 2017

Seeing Clearly



I read an article called ‘Seeing Hope’ today.  It opens with a teaser of what life is like for three adolescents; Caroline, Cole and Christian who received an experimental gene therapy called Luxturna, which has been able to correct a specific kind of inherited blindness called LCA - Leber Congenital Amaurosis.   Caroline saw her Mother’s face for the first time, her brother Cole marveled when he first glimpsed the stars over Little Rock and Christian saw the judges faces as he knocked their socks off on America’s Got Talent.  They are incredible stories and I was so happy imagining how those kids and their parents must feel.  I can imagine those feelings all too well, because I spent the first two years of my son’s life dreaming one singular dream for him – that one day he would be able to see.

My son was diagnosed with ROP – Retinopathy of Prematurity the day he turned 5 months old.  The doctor who told me that my son would eventually go blind had tears in her eyes and hugged me when she saw the tears spilling out of mine.  In this blog, I chronicle the voyage I had to take to get beyond the darkness.  However, by the time my son was two years old, I had educated myself enough to see the light that manifested itself in my incredible little boy. That light is the only thing my son has ever known because I realized early on that my child was going to be just fine in a world he’s never seen.  My son had shattered every preconceived notion I had about disabled people before he even realized he was different.

From the moment my boy could understand the words that were coming out of my mouth, he has known that his eyes are broken.  He understands that he lacks ‘a primal sense’ that most other people posses.   You know what?  He’s ok with it.  Better than ok actually, he gets better grades than most of his sighted 5th grade peers, has a memory like a steel trap (more for video game cheat codes than when his homework assignments are due) and what they call an ‘absolute ear’ for music.  I look at my son and I feel such ridiculous pride over all his accomplishments.  My heart leaps when I look at how well he’s doing compared to what I thought his life would be like the day I got his diagnosis.  He doesn’t really know that though because, for him, he’s not living a life of disability...he’s just living a life that he can’t see with his eyes.

It has been a long time since I wished for sight for my son.  His eyes are broken beyond the help of any gene therapy.  He was born with a trifecta of eye issues and now wears prosthetic lenses in both eyes so my interest in the article wasn’t personal; like every other parent in my online support group I’ve become an armchair ophthalmologist, so I keep up with the news.

The thrill I felt for the children with C names ‘Seeing Hope’ introduced me to was quickly replaced with another feeling.  Disappointment that began to smolder into indignation and finally burned into anger because of the disparaging way the author portrays the life of blind people.  It seems to me that she thinks the blind can’t be mainstreamed in school, find gainful employment or stand a chance of leading rich, independent lives.  She might not say it directly but that sentiment oozes through ever word and my first thought was: what would my son think should he ever stumble upon those careless words. 

I’d like to think that the child I’m raising would laugh about it and that his only comment would be; ‘How did that kid make it to 13 years old and not realize that rain falls from the sky?’ but I hope he never reads it.  In the world I’ve forged for my son it doesn’t matter that he’s blind and I’d hate for him to be slapped in the face with the harsh realization that there are people in the world who view his life with such hopeless expectations.

Lucy Sirianni is an advocate for people with disabilities.  She’s an amazing young woman, who happens to be blind herself.  She’s an inspiration to so many other people - not because she does what she does while blind, mind you - but because she does what she does with wisdom, grace and poise.  Here is her response to ‘Seeing Blind’:

On Sunday as I was headed to grab a latte from my favorite neighborhood coffee shop, enjoying the crisp fall air and the brief break from work, a young woman ran up behind me and asked me breathlessly if she could "pray for my eyes." 

On Tuesday as I sat in the back of a Lyft thinking over a particularly challenging moment in the dissertation chapter I'm writing, my driver asked abruptly, "isn't there some sort of surgery--for your eyes? 


Today, the FDA is considering approving a new treatment for which some people with my eye condition would be eligible. This is not a bad thing in itself, but it has spawned a host of appallingly ableist postings and articles--articles with nauseating headlines about "seeing hope" that only get worse from there, suggesting that those of us who are blind lack independence, are unlikely to succeed in mainstream school or employment, and (direct quote) "have nothing." 


Blindness certainly comes with its challenges, but it's not something I view as a problem. Being viewed as broken, less-than, limited? Not being allowed to go out in public or scroll through my Facebook newsfeed without being reminded that this is how most others see me, and constantly feeling forced to put my life on hold to assert my worth and abilities? That's where the problem lies. Please: stop doing this. Stop assuming those of us who are blind view ourselves as broken and want to be fixed. Stop assuming our lives are Bleak and tragic. Stop sharing articles that perpetuate these harmful misconceptions; the content may be interesting, but the presentation is intensely damaging in countless tangible ways. 

If you really want to support us, understand that ableism exists. Acknowledge that it's pervasive and insidious and that (like most "isms" in our society) it's something that's instilled into all of us and that we have to work consciously against in others and even in ourselves. Then start doing that work. Some blind people would seek out a change in their eyesight if given the chance; some, myself included, have no interest. Some will be eligible for any treatments that become available; others won't. In short, gene therapy is a fine thing, and I'm happy that my friends who would like to pursue this option will likely have the choice to do so in the not-too-distant future, but genetic treatments will benefit only a relatively small number of blind people. Creating a less ableist, more informed and accepting world will benefit us all.

~Lucy Sirianni

I’m quoting Lucy because she managed to eloquently convey thoughts that I probably couldn’t have expressed without dropping several f-bombs and possibly taking a cheap shot at the author’s writing style, and that would have cheapened the overall quality of this response.  

I will say one thing with unconfirmed certainty, ‘Seeing Hope’ was not written by someone who has any practical experience with blind people.  She seems to be sadly deluded, feeling sorry for people with disabilities and probably imagines blind people living sad little lives, quietly cashing their disability checks and wishing with all their hearts for eyes that can see.  Perhaps there are some blind folks out there that live like that, but none that I know.  If there are and they've been blind since childhood,* I imagine that they were raised by parents who spent their lives wishing for a cure for blindness and lamenting their fate instead of taking blindness as nothing more than a stumbling block along the way.

We live in a world that’s dramatically changing every day.  The technological resources that are available for people with disabilities are equalizing game changers; as are the advances being made in medicine on the genetic level.   If this treatment had been a viable choice for my son the day I received his diagnosis all those years ago, I’ll be the first to admit that I would have sold my soul for it because I, like the author of ‘Seeing Hope’, had been so programmed by society to misunderstand the definition of the word disabled.  I thought it meant unable. I assumed it defined a life as opposed to being one aspect of it.  Though my son might have gained some vision, I would have denied myself my greatest joy in life, being mother of this amazing child who, frankly, wouldn't be the person he is if he could see.  

Here’s my sincere hope that the authors of articles like ‘Seeing Hope’ will take a little more care with their words in the future.  My son’s blindness is not a disease that needs a cure; the ignorance that leads people to believe it is – that’s the problem.



*Being blinded as an adult is quite different from having vision loss since birth and much more difficult to manage.  My statement was not designed to disparage anyone who might be struggling with their condition, please reach out for help if you need it.

Friday, August 18, 2017

A Beginners Guide to interacting with the Blind



A beginner’s Guide to Interacting with the Blind.

Hello, my friends.  Welcome back to my dark pages.

I’ve recently decided to dive headfirst into the dicey practice of cultural appropriation.  No, no…calm down.  I have not taken up Tibetan throat singing, given myself ridiculous white girl dreadlocks* or dyed my entire smurf blue.  What I’ve been doing is immersing myself in the world of the blind.  How have I been doing that?  I’m so glad you asked.  I’ve become a creeper on the interwebs. Yes, people.  I have become a creepy internet lurker…   

Dun-dun-DUN!

I belong to several groups of Facebook (most notably one called Nerds with Vaginas) but also a few other groups that are blind specific.  I have two favorites.  One is called BlindPenPals, which is a wonderful, well organized group where blind people all over the world can meet and the other is Parents of Blind and VI Children – where parents, like myself, support each other.  They are both wonderful groups and I’m grateful for both their existence and to be a part of them.  My inclusion in the blind community is relatively recent and I’ve found it to be an experience that’s moved me to words.

What specifically motivated me to write for you today is a theme I see spread far and wide across all my blind based social media: There are a lot of times that blind people feel left out and lonely.  Obviously, blindness is a disorder that keeps people in the dark.  Unfortunately that statement cannot be taken only literally and the figurative darkness that blind people experience is often not their fault.  It’s on you.  Back before my heart was stolen by a tiny, blind guy, it was on me too. 

I used to be kind of a jerk to disabled people.  Not with deliberate actions of course, but with uneducated indifference which can be just as bad (if not worse).

I have a very clear memory from childhood.  I was about 6 or 7 and my mother and I were in a grocery store.  A woman walked past us wearing leg braces and those metal crutches that fit around the upper arm.  I was staring at her and my mother nudged me and hissed, ‘Don’t be rude’ out of the corner of her mouth.  Once the woman was passed, she explained that that woman was born with birth defects that didn’t allow her legs to grow properly.  She mused about how hard it must for that ‘poor thing’ and reminded me to count my blessings.  I attribute much of my compassionate nature to my mother’s influence but after my own son was born with birth defects, I realized in this particular case her teachings were wrong.  

She called that woman a ‘poor thing’ when she could have called her strong.  Instead of simply telling me to count my lucky stars she could have asked me to imagine my life if I was the one with faulty legs.  Instead of telling me to look away she had a chance to encourage me to smile at that woman with a smile of her own.

Years went by and my intimate life was devoid of people with physical disabilities.  It was ripe with people with mental disorders… but those are stories for a different blog.  In social situations, when I saw a disabled person, I’d stick to the script I was taught as a child: look away, thank God it isn’t me.  I’d feel very uncomfortable and nervous around the disabled.  I never knew how to act or what to say - terrified of unwittingly saying something offensive…so I’d just avoid interaction as much as possible.

Obviously, that has changed for me by now, but I remember how I used to feel and I’m not about to pretend that I’ve always been the advocate for inclusion and acceptance that I am today.  I’m going to use my intimate knowledge of being on both sides of the disability divide and I’m going to try and build a bridge of understanding.   I’m going to focus on the bridge between the blind and seeing people; who will hereafter be referred to as ‘the Sightocentric’.

****

The first thing to remember is that every blind person is well…a person.  At first you’ll get lost in blindness.  This is to be expected, and it’s ok.  Blind people are a little different, I get that.  They get that, too.  The most important thing to remember is that blindness is one aspect of who they are, it does not define them.  Behind every pair of dark glasses, white cane or guide dog there is an actual human being with feelings as real as your own.  And, just like all of the other people in your life, blind people come in various colors, religions, ethnicities, degrees of education and levels of douchebaggery.  Some are funny, some are sad. They can be mad, or glad or bad.

As a sightocentric person it might be awkward to you at first - having interactions with someone who tends look above your head, over your shoulder or at your left breast as you speak to them.  Humans have come to value eye contact as a way of connecting with one another. We’ve come read each other by looking at each other, judge people’s honesty by their ability to hold a steady gaze and realize when people are joking by a certain twinkle in their eye.  Good luck doing any of that with my son.  He eyes are made of plastic and I didn’t spring for the swanky embedded Swarovski crystal lenses that throw off rainbow prisms in the light.**

However, under those plastic lenses is the smartest little boy I know.  He’s sweet and stubborn and funny as hell.  He speaks four languages remembers any video game cheat code he’s ever learned out of his head and plays the piano by ear.  You can’t tell he’s joking by the glint in his eye, but you can hear it in his voice if you know him well.  But if you ever want to get to know him well, you’ll have to get past the fact that he’s blind.

I’m going to help you do that in 4 easy steps.  Just send 20 dollars (US) to my paypal account and I’ll send you my revolutionary new e-book: 

A Beginners Guide to Interacting with the Blind. 

I kid, I kid…here we go.

Step 1 –Respect the stick/ Don’t spoil the dog

If you see a blind person with a service dog there is just one thing you need to remember: That is not your dog.  Say it again, not your dog! 

One of my friends gets irate because a man in her building sneaks treats to her service dog, Trixie.  When my friend confronted him about it, he denied giving the dog a treat but my friend could smell Milkbone dog biscuits on Trixie’s breath.  Here you have a man sneaking treats to a service dog and then lying about it when he should have simply remembered: That is not my dog.  Guide dogs have trained extensively to be Thomas the Train level useful but that training can be easily undone. You don't need to stress yourself with the training process just remember these simple words: not your dog. 

Also, there is a difference between a guide dog and a companion dog.  A dear friend of mine was brutally attacked by a man once a while ago.  She's fine now, thanks for asking, but emotional scars can run deep.  She has a little pocketbook poodle who had the attitude of a Pitt Bull when it comes to defending her mistress.  She has permission to take her dog into all sorts of places dogs don't usually go, like a guide dog, but that where the similarities end.  Magnolia (the Pitt Poodle) has received no special training, and does not behave with the decorum of a guide dog so my friend knows better than to ever expose an actual guide dog to her hyperactive ankle biter.  Make a note of that, should it ever apply.

White sticks have been the primary mode of ambulatory independence blind people have enjoyed since it came into vogue in France in 1931.  If you ever see a person crossing the street with a white stick held horizontally in front of them while you’re driving your car, you must stop. That is a universal law, that no one ever seems to know – but I’m telling you now.  Make a note of it.  Many blind people come to think of their sticks as extensions of themselves.  They depend on them.  Don’t move them without permission and definitely don’t pick them up and have a pretend sword fight.  If you happen to be lucky enough to befriend a blind person you may get the opportunity to fold a white stick up if you ask nicely.  It’s surprisingly fun. Put it on your bucket list.    

White sticks are very useful but imperfect.  They miss tree branches, low hanging street signs and excitable Poodles.  If you ever see a blind person walking with a cane headed for one of the aforementioned hazards; give them a little heads up.  Just yell, “Hey! Mr. Blind Guy! There is a low hanging branch with a street sign on it that says ‘Beware of Pitt Poodles’ in front of you.  You should move to your left!  Have a nice day!’

I’m being flippant, of course but if you’re ever in a situation where you see a blind person headed for trouble definitely try to warn them.  That being said, we’ve arrived at…

Step 2 – Don’t ever assume a blind person needs your help.

Imagine yourself in your house, late at night.  There’s only the faintest ambient light in the background, you can’t really see but you know the way to the kitchen by heart.  Suddenly, with no warning, someone grabs you by the arm and asks you if you need help.  How do you react?

Blind people are a lot more independent than most people give them credit for being.  If you see a blind person rolling solo, out for a stroll in the park or on the street; the absolute worst thing you can ever do is go up to them and grab them.  Can you imagine that?  You’re walking along, enjoying the breeze and then suddenly someone you don’t know - that you never saw coming, has their hands of you.  As you’re reading these words it may seem obvious, but you’d be amazed at how many blind people are being randomly accosted and frightened by Good Samaritan wannabes every day. 

It comes from a good place, I know it does but it’s not necessary.  If you see a blind person on the street chances are good that they know exactly what they are doing, where they’re going and don’t need help.  Chances are equally good that if a blind person does get confused, they will stop and ask for help.  The following is an example of how that situation might go down:

Blind Person on the street to no one in particular:  Excuse me? I seem to be lost.  Can anyone help me get my bearings?
You (without making physical contact): Hi! Can I help you?
Blind person: Yes, please.  I’m trying to get to 5th Avenue. Which way do I go?
You (without pointing): You need to continue walking down this street for two blocks and then make a left.  That’s 5th Ave.
Blind Person: Thank you!
You: Do you need help getting there?
Blind Person: I’m ok now, but if you’re walking that way we can walk together.
You:  I’d love that.  Hey, will you be my new blind BFF and let me fold up your stick one day?
Blind Person:  Ummm….no.  You just kinda creeped me out and I have to go now.  Thanks for the help. Have a nice day.
You:  Wow.  I never knew blind people could run so fast.  Oh, good.  He turned left onto 5th.

It is very difficult to be blind.  I can say that with more authority than most sightocentrics can muster because I watch my son struggle to do things that come so easily to other people.  The struggle is real, but don’t think for one second that ‘disabled’ means the same thing as ‘unable’.  Helping people is a wonderful thing, when it’s needed.

I’ll be leaving off here for now, but please stay tuned for the exciting conclusion to this post which I will finish writing as soon as you all send your 20 dollars or when I wrap up another project I’m working on, whichever comes first.

Keep it classy, People.


*Ok, there was one time in the mid 90’s that I had ridiculous white girl dreadlocks, but in my defense: Alanis Morrisette

** As far as I know Swarovski crystal prosthetic lenses do not exist but if they did I would totally spring for them in a heartbeat.


Friday, June 30, 2017

Relativity



I had the most vivid dream the other night.  It was years in the future and I was waiting for Gabriel, now a young man, to come out of surgery.  I’ve been there before, but this time there was hope in my heart instead of just an empty, aching sense of loss.  I was ushered into the recovery room and anxiously stood by my son’s bedside as he made his groggy way back to consciousness. He blinked.  And then blinked again. His eyes widened as he took in visual stimulation for the first time in his life.  Tears filled dream-Stacy’s eyes as she realized that the operation had been a success, the computer chips in my son’s eyes were allowing him to see for the very first time. 

Dream-Gabriel looked at me, astonished and said, “Wow. Mom.  You look absolutely nothing like I thought you would. Have you always been so small?  Now step aside so I can show you how I can perfectly cook meat with the laser function of my robot eyes." Then we ate T-bone steaks with our hands like savages and laughed about how he used to be blind.

My first thought when I woke up was, ‘Holy crap.  That’ll teach you to eat sushi at midnight.’  My second thought was, ‘Where the hell did that come from?’  I live my life with only one absolute certainty these days: My son is blind, blind since birth, and blind he will ever be.

I’ve caught a lot of flack for that certainty over the years, people have encouraged me to chase all sorts of miracles from biblical to scientific, but this is the way that I get by.  My Little Dude is blind, I have to make the best of it, I need to own that shit because that’s who I am – a realist.  I am not capable of being the best ‘Blind Mom’ I possibly can be if half of me secretly yearns for Robo-eyes. Incidentally, why would Gabriel try to be the best blind guy he can possibly be, if he’s betting that one day he won’t be blind anymore?

If you ever want to see me go from polite to irate in 0.7 seconds, come up to my kid and I and tell us how one day technology will let him see.  I’ve said it before, but false hope is the absolute worst.   There are people on the fringes of my life who have the luxury of thinking about things like that, and I say bully for them.  Maybe one day those thoughts will inspire someone to figure out how to make those robo-eye and, if so, I’ll be the first one whooping it up -talking about ‘how wrong I was’ - but for now blind is blind. Boom. Done. Or so I though, until my vivid T-bone dream. 

I suppose somewhere, locked away in my heart of hearts, is the tiniest whisper of a wish that one day my boy will be ‘normal’.  That’s the deepest divide I feel from the parents of perfectly formed children and it’s something that they honestly can’t even begin to fathom.  My child is starting out life with a huge handicap.  If life were a race, it’s like he got handed a 20 kilo boulder at the starting line while all the other kids got a feather.   I don’t often let myself think in those terms, but it’s true and there is nothing I can do about it except make my peace, and I have.  Well... at least while I’m awake.

But my crazy, late-night-sushi dream got me thinking about another group of parents.  To these folks, my boy is the one carrying the feather, because their children can’t walk to the runners mark.  I’m talking about the parents of children with multiple disabilities and the blindness that so often accompanies their child's primary diagnosis.  These brave little ones have so much working against them as their parents stand behind them lifting them up as best they can.  These parents are absolute warriors.

I’ve had the privilege to get to know one of these parents.  Her name is Amber Bobnar and she’s and her son Ivan are - respectively, the founder and the inspiration behind Wonderbaby.org.   Their story is not mine to tell, but I can imagine that Amber doesn’t always appreciate this little blog of mine because my problems are feathers in the face of her boulders and I couldn’t even imagine the depth of her emotional basket (though I wouldn’t be surprised if it could drain the Mississippi dry).

Like I secretly yearn for meat cooking, robo-eyes, perhaps Amber occasionally wishes that blindness was the only challenge her boy had to face.  I only know Amber on a professional level, so I can’t really say how she feels, but I can imagine.  Her son’s disabilities are on center stage all the time, yet somehow this woman managed to find the grace and peace of mind to take their obstacles and build a bridge. And, boy, what a bridge she built.  In my opinion, Wonderbaby,org is the best resource for the parents of blind children.  If you kid is blind and you haven't checked it out, do so immediately.  Seriously, don't even finish reading this.  Go there right now.

I think I was one of the first lurkers on that website because when Gabriel was small, every day I’d Google “Oh, shit! My kid is blind!” and for the first few years nothing happy came up.  Then one fine day, after being without internet for a while, my Google search showed me Wonderbaby.  It was the first time I got to interact with parents like me. I had a community who understood me, for the first time as a parent.  It inspired me to share my journey through the darkness with you.

I can’t relate to Amber anymore than parents of perfectly formed children can relate to me, but I recognize that comparatively, I have it easy.  Sure, things are challenging for Gabriel.  He has to work so hard at things that come so easy for others. Tying his shoes for example – I drove the both of us crazy for 6 months straight trying to teach him to tie his shoes and then one day I just said, ‘Fuck it’ and bought him loafers.  As his mother, I also work really hard.  I spend a lot of time thinking about how to teach him to do things for himself because my endgame is clear: teaching him to be the happiest, most independent blind guy he can be.  It’s a constant work in progress but most days I get to feel like I’m winning. I'm lucky.

At the end of everything, loving parents have one thing in common: we want the very best for our children.  Most of you don’t have to fight as hard as I do.  That’s not to say you don’t have your struggles, but you do have it easier.  And there are other parents who have to fight so much harder than I do.  Every moment of every day, they are fighting, advocating and giving their children a voice in a world that too often only wants to look away from them.  They have to endure inappropriately painful questions from random strangers, fight with the insurance companies while going for broke paying for doctor’s visits, hospital stays and specialized medical equipment.  For these heroic parents, simple sightlessness probably sounds like a picnic in the park. Like my man, Einstein said: everything is relative. 

I salute you, Amber and all of your fellows.  Your dedication to your son is awe inspiring.  Your website, for many (myself included) was a game changer.  You’ve taken the hand you were dealt and not did you 'own that shit' but you turned it into a way to help so many people.  You inspire me and I just wanted to take a moment, in my convoluted way, to say thank you.

Tuesday, May 2, 2017

The first day of the rest of the next 10 years



Gabriel is swiftly approaching double digits.  In a few short weeks I’ll be the proud parent of a 10 year old and all of the accomplishments associated with keeping a child alive for an entire decade.  The next 10 years will be markedly different from the ones we are about to close.  The baby that he was lives only in my memory and on my Youtube channel and, like every Mother, this causes me equal parts joy and pain. 
 
I am so proud of the little man he has become, but I would give almost anything to have just one more day with the sweet toddler that he was. One day when I could still completely rock his world with a cookie and make him laugh like a maniac with mouth farts.  An afternoon playing in the sun, his sticky little hand in mine, back when he only ever called me Mommy and spoke that word like it was the secret of the universe.  Just one more night where I could snuggle him to sleep, confident that everything was ok with him, knowing that he was happy and safe and then dream my dreams for him after I tuck him into his crib.

This is something we all have to deal with as we watch our children grow, but I think it’s especially poignant for parents with disabled children.* When our kids were little it was so much easier.  We were able to cater their world to better suit their needs.  We had the luxury of explaining to them that they were different without having that fact constantly thrown in their faces.  The people we spent the most time with understood our kids and how to behave around them.


Fast forward 10 years>>>>>


Gabriel has had 2 major surgeries, lost both of his Grandfathers and last year he had the worst teacher in the world, who frequently shamed him and made feel bad for being blind.  He’s been bullied, he’s been teased, he’s been left out… In short, he has fully come to grasp what being disabled means in his life.

We all start out life with what my dear friend, Laura, likes to call an ‘emotional basket’.  This is a term she uses to describe how much pain a person can take before they fall apart. Some people have big baskets and some people have smaller ones but we all have a tipping point where the things we have to carry become too much for us to bear.

I was struggling a few years ago, around the time my Father passed away, and Laura advised me to realize that when things get bad in my life, I should try and remember that my basket (which is pretty big – if I do say so myself) is never completely empty because blindness lines the bottom.  I never get to fully empty my basket.  She suggested that I occasionally cut myself some slack, and every once in a while acknowledge the heaviness of the load I carry.  

 It was sound advice and I’m not sure I ever told her how helpful it has been in my life, but it’s almost like that one little phrase ‘emotional basket’ gave me permission to have days where I can’t be: Stacy - the ultimate warrior mother who can deal with everything life throws at her and still make a fabulous dinner. 

I still strive to be Warrior Stacy every day, but over the years I’ve come to embrace that fact that sometimes I have to let Wimpy Stacy (who just wants to cry and drink wine) out so she can grieve and allow Every Stacy some time to heal.

But what about Gabriel?

What about my baby’s basket?

Gabriel gets up every day in a world he has never seen.  He gets dressed, brushes his teeth, finds his shoes and shambles into a school where every other person there has eyes that work.  He knows that he’s the odd man out, but just in case he momentarily forgets, there are 26 other kids in his class to remind him.  Kids who can write with pens instead of Perkin’s braillers. Kids who can run and play freely during recess. Kids who seldom want to play with him.

In the event that he makes it through the day without indecent, half the time he has a younger stepbrother in the house who can do many things better than he can and isn’t shy about pointing out that very fact. These days it seems like my kid just can't catch a break and I find myself wondering
what the hell does his emotional basket look like??  I'm starting to suspect it’s made of titanium and roughly the size of a Buick.

To top it all off, he’s got me (Warrior Stacy) cheering him on, encouraging him and telling him that he can’t let his blindness get him down, that he shouldn’t worry about the fact that other kids are mean to him and that he has no real friends.  He’s experienced snatches of Wimpy Stacy over the years, but she mostly does her wine-crying in private.

Do you see where I’m going with this?

These last 10 years, I’ve held the emotions I feel over my son’s condition close to my heart to protect him from it.  I never wanted to stain him with my sorrow.  I stand by that.  However, I’ve recently come to realize that I need to help him learn to deal with his own feelings about being blind.  I have to help him understand about his emotional basket and accept that it has limits. I have to help him find that fine line between ‘feeling sorry for yourself’ and ‘feeling appropriately sad sometimes’.

Since I’m from New Jersey, I’ve decided to go for straight-up violence.

Today after I pick-up my Little-Big Dude from the ‘bad place’ (aka:school) I’m going to take him to a deserted beach and give him a pile of rocks. I’m going to ask him to name each rock after one of his problems and then I’m going to let him throw that son-of-a-bitch-of-a-rock as far away from himself as he possibly can. I might even let him drop F-bombs while he does it. 

Today I’m going to give my boy permission to be angry, or sad, or scared…in whatever way makes him feel better.  I’m going to let him be nothing less than a blind, little boy who is allowed to feel sad because of all the things he can’t see.  I will let him embrace that sadness and make it his own, for a little while - just a little while, and then we’ll resume our regularly scheduled programming where I am a Warrior Mother and he’s the Badass Blind Guy.

There’s no way that I can ever have another day with my baby, but today I’m going to help my son take a big step toward being the well-adjusted blind man I know he will one day become. A man whose unseen face, for me, will always contain the shadow of my little boy.





* The word disabled still makes me shudder, but I have decided that fucket-up is also not appropriate.  I’m pondering this still, all suggestions are welcome.