Tuesday, October 12, 2010

"Secretly Disabled"

I've had a post sitting in my "to be posted" list for quite some time now.  I keep going back to it, re-reading it, editing it yet again.  Somehow, I can't get it just right.  No matter what I write or how I write it, I can't find the words to express what I'm trying to say without sounding whiny or complainy.  Just yesterday, a fellow blogger, Matthew's Mommy, posted on the same subject.  She referenced another blog post that you can (and should) read HERE.

Basically, these moms have hit the nail on the head.  We have been parenting a "secretly disabled" child for just under a year now.  She is cute, cuddly, beautiful, sweet and, not so obviously, disabled.  You cannot see the dozen scars on her head or the two shunt bumps and tubing.  Her central line is hidden by her shirt as are all of the scars on her chest and abdomen.  You can't see the scars on her neck because of her super-cute, chubby chins.  You can't tell that her left arm and hand don't work.  You can't tell she has Cerebral Palsy.  You can't tell that she has Epilepsy and significant neurlogic damage.  Her nystagmus causes her eyes to be in constant motion which outsiders take as her "looking around at everything."  Anytime EVERY time we take her out anywhere, there are comments, whispers and curious glances.  "Oh, she's so sleepy."  "Isn't she walking yet?" "What's wrong with her eyes?" "I can't seem to get her attention."  "Maam, we don't allow strollers in here."  I could go on and on.  Although ignorant and hurtful comments do drive me nuts, I'm more bothered by the people who stare or whisper and don't have the guts to ask a question.  Now that we've got M's wheelchair, it is slightly more obvious to people that she may have other issues, although many people think it's just a really fancy stroller.  In a way, it has helped "out" us.  While I don't give a hoot what other people think, it's exhausting to constantly have to justify and explain things.  M cannot sit in a high chair, a booster seat or a shopping cart.  She's too heavy for infant seats.  Basically, without her wheelchair, we cannot take her to a restaurant or a store unless we hold her the entire time - not fun for her or us. 

My desire to write this post was driven by my sheer need to just get it off my chest.  However, hopefully there's a little bit of education here, also.  Hopefully when you're out and about you'll remember that people are so very diverse.  Everyone is dealing with something.  Don't make assumptions and if you have a legitimate question - ask it! 

1 comment:

janiece said...

I understand--very much so. Sometimes, all you can do is sigh and move on--and hope the people's ignorance passes.