Wednesday, June 27, 2018

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 32nd 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.






Tuesday, March 13, 2018

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 7th 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.
 



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.