A Fine Line

People often ask me if I get annoyed being asked about Ella all the time.  In complete and utter honesty…no.  Most of the time it really doesn’t bother me that people ask about Ella.  I’m not oblivious to the fact that she looks different than typical children.  I’m well aware that when others see her they don’t see your every day, run of the mill 6 year old child.

I feel incredibly fortunate to live where we do.  Washington, DC is a vast quilt.  We live in a melting pot for every kind of culture, religion, ability, age, artistic expression, attire, and the list goes on.  Being “different” in DC isn’t nearly as out of the ordinary as it is in other parts of the country.  That said, while we are surrounded by hundreds of thousands of people, our neighborhood is quite small.  I often joke that everything we need is within a 3 mile radius of our house.  I always shop at the same grocery store, which means that most of the cashiers have seen Ella numerous times.  We have gone to the same pediatrician since she was born.  We have used the same pharmacy since she was born.  Our neighborhood is full of kids who go to school with Ella, so when we see them out and about they don’t react because they see her every day at school.  When we eat out we usually hit up the same 10 restaurants, so they don’t even give a second look and in most cases, they are on a first name basis with Ella. 

Joe and I decided long ago that we had 2 choices: 1) Stay home all the time and raise Ella in a bubble, or 2) Go out into the world and learn to ignore all of the stares and answer the questions as open and honestly as we can.  The truth is, a majority of the people who come up to us are genuinely interested in what happened and are only asking out of compassion.  Most people assume she has been in some sort of fire and feel like they can offer help.  I appreciate that they want to help and am perfectly fine informing them about EB.  Of course there are those few that choose to give dirty looks or make rude comments, and there are definitely those that assume I’m a bad mom and she’s been left out in the sun for too long, or I’m feeding her too much sugar.  But for the most part, people are kind.

Unfortunately, Monday I had one of those terrible experiences that made me want erupt.  Monday I decided that we were going to have a mommy and Ella day.  Nothing too exciting, just a day out of the house for us to spend together before school starts back in a couple of weeks.  It started with a trip to Target to buy school supplies.  Ella read each item on the list perfectly while I pushed the carriage up and down the aisle to grab the items.

Once we finished with Target I told Ella that we were going out to lunch, just us girls, and she could choose any restaurant she wanted to.  It didn’t take her long to decide that she wanted pizza and wanted to eat at a local restaurant where we often eat.  In fact, when we arrived Ella’s first question was whether or not her favorite waitress, Betty, was working.  Betty was not working, but that’s beside the point.  We sat in our booth and soon placed our order.  As we were waiting for the pizza to arrive, I decided to take Ella’s picture and text it to Joe.  While I was focusing my phone, Ella got a strange look on her face and started to look at something out of the corner of her eye.  Standing at the end of our booth was the bus-woman (not sure what to call her, but the woman who buses the tables when people leave).  She was staring at Ella very intently, as if she was examining her entire body.  People often stand back and try to get a look at Ella, but within seconds they look away.  And they usually stare from a distance in hopes that mother bear will not catch them in the act.  This woman, however, was standing right at the end of our table.  We were at a 2 seater booth, so she was right upon us.  I looked at her and smiled (this usually triggers something in the person that tells them it’s time to look away)…she still stared.  I asked if I could help her…she just stared.  I ignored her and took Ella’s picture…she continued to stare.  Finally, I started trying to have a conversation with Ella (who was obviously very bothered by this stranger)…the woman STILL stared.  She stood there for probably 10 minutes before finally walking away.  And every time she would walk by to clean another table, I could see her trying to catch a glimpse of my child.

Ella hates being stared at.  She knows how to answer when kids at school ask about her boo boos, and she knows to politely ask them not to stare.  She even knows that it’s not polite for her to stare at other kids.  Most of the long stares come from kids, and the worst are from kids whose parents don’t try to use the opportunity to teach them about what is rude and what isn’t.  There are parents who just stand to the side and let their kids say whatever pops into their mind while Joe and I try to redirect them away from our child.  But this was a grown woman who kept staring for a ridiculous amount of time.  I didn’t want to be rude to her by making a mean comment, yet she was being rude to us.  I wanted to say to her, “Hey Lady!  All I want to do is have a fun lunch with my daughter and all you can do is ruin that lunch by staring at her.  GET BACK TO WORK!”  But I didn’t want to cause a scene.

I don’t think I handled it the right way, by just trying to ignore it.  But I’m not sure what would have been the right way to handle it.  Being a mom is hard.  Being a mom to a non-typical child is really hard.  I want to protect her from those rude people, to yell at those who give her a negative look, or stare for just a minute too long.  But I also want her to learn that rudeness doesn’t always require a negative response.  There are ways to rise above it and hope that the other person learns something in the process.  I want her to see a loving mom who isn’t ashamed of who she is.  A mom who looks beyond the boo boos and answers questions from strangers with love.  Not a mom who walks around with her guard up waiting to attack.  My first responsibility is to Ella.  My job isn’t to teach others what is rude and what isn’t.  My job is to teach Ella how to respond to rude comments and stares with dignity and Godliness.  The last thing I want to raise is a child who walks around with a chip on her shoulder.

I have to admit, I have been known to give rude stares back.  I have been known to say “Stop staring at my kid!”  I have been known to contact a department stores headquarters and report employees who made rude remarks about Ella.  And yes, I’ve been known to yell (yes, full blown yell) at a kid (in front of his father) who came up and said “ewww” while pointing at Ella.  I’m human.  While I know those weren’t the right way to respond either, I also want Ella to see a mom who knows the limit and will stand up for her when necessary.  It’s a fine line between the two, and I’m still learning when to cross.