Saturday, November 14, 2015

The Word I Couldn't Say

 I believe that I mentioned in an earlier post that a while ago I met with a woman whose daughter has the exact same eye condition as my Little Dude.  She was understandably nervous with a huge surgical procedure looming ahead of her child.  Since Little Dude had the same surgery the previous year I was more than happy to share my experiences and ultimately encouraged her to go ahead with the surgery.

During the course of the conversation, we wandered off track and started swapping war stories.  Some moms are soccer moms but we’re blind moms and I’m proud to say that we’re doing a pretty darn good job of it.  Both of our kids go to school with sighted children and are holding their own so we formed a mini mutual admiration society and bonded over instant coffee and Retinopathy of Prematurity.

Theresa is the antithesis of me.  She’s perfectly coiffed and her purse matches her shoes at all times.  She wears tasteful jewelry and bakes cupcakes for affairs. I’ve never heard her say a harsh word about anything and once I’m pretty sure one time I saw a blue bird land on her shoulder just to chirp hello.   She probably gets all her kids permission slips signed on time and is involved with the PTA.  She is Super Mom.

Me?  I’m a complete mess.  I roll up in jeans and a T-shirt with ink stains on the sleeve, usually about 5 minutes late.  Sometimes I use a twist-tie when I can’t find a ponytail holder.   Last week a blue bird landed on the table in my backyard and I chased it away with a broom and a string of creative curses. Gabriel had a walk with school yesterday and I turned in the permission slip when I picked him up…after the walk. It had a stain on it that looked suspiciously like Chardonnay.  I’m constantly amazed that I’ve managed to keep, not only myself - but another person, alive for all these years. I’m Slappy Mom. 

Theresa and I could not be more different, yet she is the woman with whom I can identify with, more than anyone, as a Mother.  She’s the only other person that I’m intimately acquainted with who understands what it’s like to walk in my shoes.*  

During the course of our conversation, Theresa mentioned that when her daughter was younger, she could never said the words: She’s blind.  It was an epiphamatic moment for me, because I always thought I was the only one. 

I remember those days well.  Carrying my infant son in my arms and the weight of his prognosis in my heart, I would shamble through life trying to avoid social interaction with anyone who didn’t already know my son was blind.  When it came up (and it did) I would launch into a verbal dance around the issue and ultimately say something like; “he doesn’t see” in a manner that would suggest it was a bold lifestyle choice. I just couldn’t make myself say the B word.  Somehow, that little word seemed to embody all of my pain. 

I used to resent those nosy strangers who couldn’t help themselves from asking all the questions I was struggling with myself:  What happened to him?  Is there anything they can do?  Are they sure he’ll never see?  But I’ve realized that those encounters, as painful as they were at the time, helped me adjust to our situation.

These days it’s a different story.  A while ago, Gabriel and I were trying on drug store reading glasses and the pharmacist told me to be careful because they prescription was strong. Laughing, I said “Oh, don’t worry.  He’s blind anyway.”  Then Gabriel chimed in, “Oh, yeah.  I’m the blind dude.”

Theresa and I had a good laugh about it as our blind kids played together in the other room.  I’m happy to have her to talk with.  Her daughter has the same fear of public bathrooms as little dude.  They both struggle with cutlery and aren’t really great sleepers. Sometimes, we use each other as sounding boards and I think that it’s comforting for both of us to know that we aren’t alone.

And neither are you.

You’ll notice that it’s been quite some time since I’ve updated this blog.  I have a lot of excuses for myself: I’ve been really busy watching Zombie movies.  I’m pretty sure I’ve developed very late onset adult ADHD.  One of my houseplants had a health crisis a while back.  There was a sale on wine.  Video games exist.  But mostly, I’ve been in a different place in my head.  Having a blind child is no longer the core of who I am, as it was when Gabriel was younger and every moment of my life was devoted to finding out how to raise a blind child.  Gabriel’s blindness has become incidental, we’re too busy living to worry about the B-word.


Until next time, my lovely darkness dwellers.  Keep on lighting the way.



*Not literally.  Theresa wouldn’t be caught dead in my shoes. They don't match her purse.

Tuesday, February 3, 2015

Sneaky Little Crayons

Hello Dear Blog Follower,

          I’m delighted to find you on my black pages again.   If you are new to the darkness, welcome!  If you’re one of my avid, rabid readers welcome back and thanks for following the misadventures of the little blind Dude and myself.

                I was recently informed that this little blogging project of mine would get more attention if I personalized it up a bit.  I could do that.  My little boy has a smile that would melt a stone heart.  He’s absolutely adorable and all modesty aside, I’m not too shabby myself.  I have so many pictures of Gabriel over the years.  From incubator to Zombie eye to yesterday, I could fill these pages with color and smiles and give you a better sense of who we are.

                But I won’t do that.

                There are several reasons that influence my decision including (but not limited to) the fact that I value my privacy and by extension my son’s.  The internet will live forever and some of the stories I tell here are deeply personal.  It is so much easier to bare your soul from the shadows, plus in years to come my boy might be completely mortified about the tale of his massive poop in Cali, Columbia. 

More than that, you don’t need to know us that intimately.  This blog is designed to reach a very specific group of people:  the parents of blind children.  It dosen’t matter who we are, what matters is what we do and hopefully the pervasive message in each of these posts is one of hope.  That it’s going to be ok.  That you will make it through the dark, as we do and that you are not alone.

However, there will be dark days.  There will be times that you see children carelessly running, biking, kicking a non-modified ball and the most secret parts of your heart will cry out, in sorrow or frustration or rage. 

I had a moment like that today.  I had a little time this morning and decided to get Gabriel a Valentine gift.  I sashayed myself to the local toy store and made a bee line for the trucks.  Then I had second thoughts.  Last time I counted Gabriel owned no less than 137 wheeled toys and plays with two of them.  So I thought I’d mix it up. 

I got him this weird digital bird thingy that interactively whistles with you.  It looks pretty cool, I think my little guy is going to love it.  There’s a chance that it might be incredibly annoying and might have to go ‘mysteriously missing’ after a spell but I’m not sure yet because it came packaged in what I can only assume is multiple  layers of titanium disguised as plastic and the toy store proprietor was watching me like a hawk.

Clutching my titanium ensconced bird, I took a quick trip around the rest of the store to make sure I wasn’t missing out on a playtime gem and there they were.  The crayons.  The people at Crayola have really stepped up their game.  Bold beautiful colors, soft pastels, neon…it’s visual candy especially for a lover of art such as myself.

The sight of all those art supplies took me down.  Right there, in front of the poster board I completely lost my shit.  It was bad.  Hot tears of regret were silently streaming down my face and for a moment I had absolutely no control of my emotions.  Talk about mortifying.

For a moment I thought I would have to ditch the bird.  I really didn’t think I was going to be able to pull off getting to the register and finishing my transaction.  But then I remembered:  I am from New Jersey.  No Crayon will defeat me.

I dropped down my sunglasses, sucked up my snot, dried my cheeks, hitched up my big-girl pants and paid for my bird.  I even had it gift wrapped.  I boogied out of the store made it to my car and gave myself 5 minutes to cry.  I was done in three, because while my heart may have it’s moments of weakness my head knows the truth: those tears don’t do a single thing.  They will not fix his eyes.  They will not make me stronger or better or enrich my life in any way.  All they will do is allow pity to creep up behind me.

Pity is a nasty creature.  It’s cousin – Compassion, is one of the best qualities a person can have.  Compassion allows you to understand people.  Compassion inspires you to reach out and help someone.  It allows you to experience very human emotions that might not necessarily be your own.  Compassion helps widen your world, it helps you grow.

Pity does not do this.  Be it self-pity or pity for others, it only encourages you to feel sad.  It encourages you to dwell on injustice and the cruelty of the world at large.  Like tears it does nothing.  It must be fought off at all costs.

So I had my three minute crying jag in the parking lot of the strip mall, took several calming deep breaths and drove home.   The funny thing is, I never have those moments when I’m with my Gabriel.  The joyfulness of his spirit buoys mine.  He is the light that gets me through the dark.

I’ve told you all along that it’s going to be ok, and it will.  However, I never promised that it would be easy, because it won’t.  There will be moments of doubt, sadness and the worst pain that you can imagine.  The most important thing is to make sure they are only moments and never allow those negative feelings to color your view of the world. 


I won’t personalize this blog anymore than I have for another reason.  I like keeping you in the dark.  It’s good practice for relating to your kid.

Monday, January 12, 2015

Pretty Double Edged Swords



                It’s a new year and I find myself feeling very reflective.  I’ve been here for almost 38 years, and in my life the world has changed so vastly.  When future robot Historians write about this time they will refer to it as the Technological Age. They will smugly detail their rise up above the carbon based bipeds who were too busy watching stupid videos on Youtube to notice that they were slowly being sucked into a Martix of sorts.  Ehh…whatcha gonna do about it?

                The most notable differences, for me, is that the world has somehow become both bigger and smaller at the same time.  All of this constant media connects us all, and yet somehow separates us.  It’s not unusual to go out and see groups of people sitting together, looking beautiful in the glow of their electronic devices but not speaking a word to each other.  The world flashes, and pulses with sound and pictures but day by day we are losing our humanity.

                Children grow up so fast these, but so many of them don’t go outside and play with each other anymore.  They chat online, and play video games but they don’t know how to play freeze tag.  They watch things on the television that would have shocked me in my youth (hell, some of it shocks me now) without batting an eye but are terrified of going out in the world alone, because we have to teach them that the world is a dangerous place. Because it is.

They've watched planes crash into buildings full of innocent people, they've seen bombs rain down on other innocent people and in the back of their minds they wonder if today is the day that one of their classmates will walk into school with a gun and start shooting.  The things they see on the news can never be unseen.  In my darkest moments, I can find a little perverse peace in all the horrible things that my boy will never have a visual image of burned onto his retinas.

                The world is also very stimulating now.  Just a hundred and fifty years ago people rode horses, sent telegrams to each other and marveled at the awesomeness novelty of electricity.  Sometimes I think it would have been easier for Gabriel to have been born in those days.  People talked to each other as their primary form of entertainment.  The read out loud, they made things with their own two hands and went to potluck dinner dances  That scenario is moot, however for it is very unlikely that Gabriel or I would have survived his traumatic birth 150 years ago and had the chance to spin yarns by the fireplace. 

                Here in the 21st century, there are so many parts of the world you need eyes to experience.  Movies and television shows have become a staple in most peoples lives.  They talk about them around the water cooler at jobs they've driven their cars to, while showing each other video clips and gifs.  

                My primary concern for my son’s future is twofold:  Will he be able to reach a level of independence that most of us take for granted?  And will he be forever left out because of all the things he can’t see? 

                I could drive myself crazy thinking about him, as a young adult in his first apartment, stumbling and spilling some juice on the floor.  Will he be able to clean it all up?  Will he miss some and be invaded by ants?  Will he realistically be capable of living alone and drinking juice?

He doesn’t get invited to many birthday parties or play dates even though he has a lot of friends at school.  I know why - parents don’t want the responsibility of having a kid who can’t see cruising around their houses.  Perhaps if I was in their shoes, I would feel the same.  Will this be a pattern in his life?  Will his friends exclude him for fun times when he’s older because he’ll always need a little extra help? 


                I have no answers to these questions, therefore I don’t often allow them to haunt me.  I focus on the here and now, and hold on to a hope.  That one day technology will bring him a benign seeing-eye robot who will help clean up the juice he spills on the floor and make it easy for him to go out and hang with his friends.  I pray that the same technology that is rapidly changing the very fabric of society will enrich his life by letting him live it the way he wants to, not just the way he can.