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.

http://www.familyconnect.org/parentsitehome.aspx

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.