Friday, November 14, 2014

It happened.

That moment that I have pictured in my mind happening again and again finally happened.

Isaiah and I went to the mall together on Wednesday, and after an hour window shopping, we took a seat so I could give him a snack.  I had his stroller facing me and my back to the people walking by (Isaiah loves people watching).

An older woman popped up behind me and asked

What is wrong with him?

No "hello".  No "awww what a cutie".  

And I was dumbfounded.  I've had many people approach us...goodness, just last week I posted about how I respond!  But man...she just blurted it out!

My jaw dropped.  In my experience, when I ask "what's wrong with him/her", the person I am referring to is crying...maybe angry....But Isaiah was neither of those things.  He was happily eating cheese balls, smiling and clapping. 

I stared at the woman for an uncomfortable amount of time trying to figure out what to say while trying to keep my blood pressure from sky rocketing.  

Inside of my head I was screaming "NOTHING IS WRONG WITH HIM [insert expletive]!!! WHAT IS WRONG WITH YOU????????"

.  Wrong. Wrong. Wrong. Wrong.  

I took a deep breath, tried to smile and look confused, "Wrong?" I looked back and forth between her and Isaiah.  "Well, he does have a condition called Osteogenesis Imperfecta; he has fragile bones...but nothing is wrong with him per say."

She definitely got the message that I was offended and upset by her question and was already running away before I finished my sentence.

Awareness fail.

Sometimes I forget that not everyone knows him.  Not everyone knows what OI is.  

When I got home I went to my support group and asked what they do in situations like this.  I got over 50 responses.  The members of the group helped to educate me, remind me how we are not alone in this, and for the most part lift my spirits.  I also posted to my personal facebook, and friends and family gave more ideas and so much love. <3

I have a plan.  I am going to make some new business card sized cards with info on OI to hand to the next person who is so bold with their curiosity.  I have ideas floating in my'll include the link to the OI foundation's website, a brief description of Isaiah's OI, and may include a brief something about the word "wrong".

Can you do me a favor?  

If you are out and about and you see a child with special needs, and maybe you get to chatting with the child's caretaker...if you are dying to know "what's wrong?", consider using different words.  Maybe something like "What's his/her diagnosis?"  It's just gentler.  When I hear the word "wrong" to describe my child, who is not sad or angry, you're basically saying something is not right, and that just kills me.  Remember, that caretaker knows and loves that child.  They love that child so much and they are able to see past the disability, they see that child.  

See past the disability.

See that child like I know you see Isaiah, ok?

And a final is a video of a mom who experienced something similar and her advice...

Just, seriously, avoid the word "wrong". ;-)

1 comment:

  1. You are so RIGHT! That is SO wrong! People really need to to educate themselves and also learn the proper rules of etiquette for every situation. I'm having a hard time dealing with something somewhat similar. My son is 13 and he was just recently diagnosed with OI, so I'm new to this. My son has a different type of OI (sorry if I'm saying it wrong, again, I'm new to this) and people keep making me feel like im the one to blame for his disorder. They say things like well maybe if you gave him vitamins he wouldn't have that "problem" or if you would feed him better food (referring to McDonald's) they make me feel very uncomfortable because they are not educated enough to know that this is a genetic disorder and I have no control over it. Sorry, this is the first time I vent on social media. I do want to thank you for your blog. I'm happy to read and learn about Isaiah and of course seeing his cute little face on my Instagram feed all the time. Lots of love and kisses for you and your family from Michelle in Florida <3