Blog · July 14, 2013

Just Smile!

I had a great friend yesterday ask me if I could write a blog about how people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do?

I must say, I had to think about this one. Truth be told, being a special need mom can be isolating, lonely.  No one knows what to say to me.  I feel a distance, a disconnect from just about everyone because I know that they don’t know what this feels like and they just can’t relate. I have family members who have not spoken to me in years because of this very reason, they just don’t know what to do. I have supposedly ‘close’ friends who can only mutter a word or two… on occasion. They might wish me Happy Birthday on Facebook and that’s where it ends.

Friends and Family are one thing, but, what about strangers? Several years ago, circa February 2002, we went to a Make A Wish trip to Orlando, Florida, to an EB event called ‘Have a Heart for EB’ so Nicky could meet other EB children and feel less alone. He had just started kindergarten and came home one day and told me how “none of the other kids have gauze“. Insert stake through my heart!! It was devastating to me, I needed to do something. I knew this event was coming which we could not afford to go to, so I requested this wish, which was immediately granted.


Make-A-Wish was absolutely amazing!

Since going on this big trip alone with Nicky would have been overwhelming for me, I requested if my then fiancee’ Greg (now husband!) and his daughter Skylar could come with us. We were planning our wedding soon (we married in June) and felt this would be a great bonding event, and it was!

Check out this video from a local news station, reporting about the Wish….

Our trip was a lot of fun. On the way there we had to stop in Salt Lake while the Winter Olympics were in full swing and it was all great fun. It wasn’t until after our first day in Disney World, when we were strolling through Sea World that Skylar, then almost 12, just could not contain herself anymore. She told us that she was just tired of seeing everyone staring at Nicky with their jaw open. “Wow, how come I haven’t noticed?” I thought to myself. I started looking around. Oh yes, it was everywhere, I suppose after 5 years of people staring at your child you kinda get used to it? How sad is that? Even just recently on our way back from Minnesota, at the LAX airport, I had to consciously look for the ‘starers’ and it was staggering!!!

Look, I understand, Nicky is different. Of course people are going to look. But, you’re looking at a child. Is it too much to ask to JUST smile? That’s all I want, really. A smile. I’ve approached people in the past, those with their jaw open and told them all cheerful… Smile!!! It’s OK to smile!!! Really it is!!!

If only it was so easy for every ‘stranger’ situation though. I’ve lost count of the times I had to take a breath and ignore. Sigh. I remember clearly Christmas Day 1999. I was in line with Nicky to buy a ticket to see Toy Story 2. All of a sudden, from the next line over, I overhear a mom answering the question of her son, who asked what was wrong with Nicky. Instead of saying ‘I don’t know’ (since we could hear her), she proceeded at telling him that Nicky had been a bad fire and all of this string of lies, I mean… she went on and on about this fire!!! I just could not believe my ears! Look, I understand you are too afraid or embarrassed to ask me, but I wish you wouldn’t make up stories while I can HEAR YOU! Make up stories with a lower tone of voice, please. Nicky may have EB, but neither of us is deaf.  It’s really all I ask, just a tiny bit of respect. Thank you!

disney02_tigger (2)sly

So, the original question was… “How people should handle things when they see a child that is disabled. Different. What do they say to the parent? Anything? Should they avoid the child or engage? What’s the appropriate thing to do?”
My answer to all of this is simple. Treat my son like there was nothing wrong with him. There is really nothing you have to do or say, just *Smile*!! If you want to ask him what’s his favorite movie or what his name is, go ahead! He won’t bite, promise! Pretend there are zero bandages on display and show us your pearly whites!
If you’re really curious, be a gem and ask, we’ll be happy to tell you! Some of us carry ‘info’ cards we pass to people that look even mildly interested. Our goal is always to educate people, EB is so rare, we need all the awareness we can get!

Smile, smile, smile, doesn’t this picture of Nicky at Disney World just make you smile? 🙂

Yes, you can stare, just smile while at it!

Thank you and Love!