Tuesday, October 30, 2012

"How do I explain?"

I was recently at a playdate with Elyse and Anabelle and about 20 other kids.  Anabelle was in her wheelchair observing the fun and enjoying the weather.  One of the other little girls came up to Elyse and asked, "Is there something wrong with your sister's brain?"  Elyse said, "No."  The little girl then came up to me and repeated the question.  I told her that there was not anything "wrong" with Anabelle's brain, she just simply worked a little bit different from herself.  Some people need glasses to help them see, some people need hearing aids to help them hear.  Anabelle needs a little extra air to help her breathe and a comfy chair to get around in (not to mention the gtube, but that wasn't visible at the moment).

Friends, I really and truly understand how difficult it may be for you to explain Anabelle's special needs to your children.  Were I not Anabelle's mother and immersed in a world of special needs families who have guided me in the ways to address Elyse about Anabelle, I may have used the same words to explain another child to her.  But, as I am in a unique position, I hope you will allow me to share some of the verbage I have acquired over the years.

First, the word "wrong" is just...well...WRONG.  Here is Merriam-Webster's definition of "wrong"

a : an injurious, unfair, or unjust act : action or conduct inflicting harm without due provocation or just cause
b : a violation or invasion of the legal rights of another;especially : tort
: something wrong, immoral, or unethical; especially :principles, practices, or conduct contrary to justice, goodness, equity, or law
: the state, position, or fact of being or doing wrong: as
a : the state of being mistaken or incorrect
b : the state of being guilty

None of these are definitions I am comfortable applying to my child.  I am especially uncomfortable with Elyse hearing her sister described as such.  Instead of "wrong" or "broken", please use the words "different" or "special".  For example:

"Mommy, what's wrong with Elyse's sister?"

"Well, Anabelle is a very special little girl, and she does some things differently from you and I.  She needs a little extra help with things that you can do by yourself.  You know how Grandma wears glasses so she can see better?  Well, Anabelle uses oxygen to help her breath better, and she has a special "extra belly button" so her mommy and daddy can put her food right in her belly to help her eat better.  Guess what she eats?  Baby food!  Just like YOUR baby sister!"

I know you all love Anabelle.  You would not be here reading this blog if you did not.  I know you would never intentionally say anything to upset us or Elyse.  The thing I would like you all to realize, though, is that Elyse has no idea that there is anything "wrong" with Anabelle.  The fact that she does things differently from the rest of the family means absolutely nothing to her.  And so when I hear other kids say things about something being "wrong" with her sister, I cringe.    I know she will have to face adversity in the future over her sister's condition due to ignorance and cruelty.  At this point, though, I know none of it comes from a place of meanness, simply from a lack of certainty as to how to address this topic with your children.  Hopefully this has cleared that up a little bit, and please, PLEASE, feel free to contact me if you would like to talk about it more, or if your child has questions that you don't know how to answer.  We want our friends, big and small, to be completely comfortable around Anabelle, so let us help you achieve that.

And, just for fun, the girls are ready for Halloween

Monday, October 1, 2012

Turning the World YELLOW

What a wonderful day, watching my Facebook wall explode with YELLOW for National Microcephaly day.  It has taken me half the morning to download all the photos I was tagged in so that I can repost them here.  As one friend said to me, "Kate your wall looks so beautiful with everyone wearing their yellow today..such wonderful support!! ♥ :)".  It truly is.  But my favorite part of yesterday was how many times I saw a comment under one of the tagged photos by another person asking, "What's microcephaly?" followed by an explanation from the photo poster on what the day was all about.  Folks is getting educated, people!  That's what it's all about!  Thank you so much for loving our girl and her friends as much as we do. xoxoxoxo