Tuesday, May 15, 2012

What's Wrong With Her?

I have come to realize, now that I live with a special needs child, that there are a lot of things out there to be offended by.  There are so many ways to put someone down or make someone feel bad about themselves or stereotype or categorize or lump or kick or berate...I think you get my point.  And there are an equal number of ways to fight these injustices, and millions of people out there with their own causes to champion, and this is the beautiful thing about being a human being, and about being one of us who are lucky enough to live in a society that allows us individual expression.  And sometimes I agree with the injury (ie: the modern slang use of the word "retarded"), and sometimes I think the "victim" is over-reacting, but the important thing is that people are trying to right the wrongs they see in their world.

And so, I would like to test the view from atop "a temporary platform used while making an impromptu or nonofficial public speech." (Thank you, thefreedictionary.com, for that definition of soapbox)  I would like to take a small stab at changing my world.  The one thing that people say to me quite often that really gets my goat is: "What's wrong with her?"  Simple enough, right?  And some of you are even saying, "Well that doesn't bother me, I appreciate them taking an interest instead of whispering behind their hands."  I TOTALLY agree with you.  I have NO PROBLEM with people asking about Anabelle's condition, and welcome the opportunity to spread awareness.  I do not consider them insensitive dolts if they ask this.  What I take issue with is that this is the accepted way for inquiring about how my child differs from theirs.  Put very simply: what's WRONG with her?  Absolutely nothing.

It is time to stop viewing different as wrong.  And time to stop accepting that if it is a rare difference, it is okay to publicly declare it as "wrong".  Can you imagine if we went about in every day life calling out differences like that?

You are wearing these:

"What's wrong with your eyes?"

This is the top of your head:

"What's wrong with your hair?"

You write like this:
"What's wrong with your hand?"

It is time to change the lexicon, people!  I am calling for your help, all 35 followers of this blog and whichever of my 200 some-odd friends I can muster when I post this on Facebook: let us begin to spread a new way of engaging in a conversation about the differences you see in another person.  I propose this:


I am, however, totally open to suggestions.  Let's brainstorm this one, come to a consensus, and spread the word!  I don't want people saying in front of my child (or her typical sister): "What's wrong with her?"  This is not the message we should be imparting.  My child isn't broken.  She doesn't have something that needs to be corrected.  She was made the way she is, and it is perfectly suited to her being.  Don't ask me what is wrong with her, ask me how her differences make her world such a special place to be.

"Ain't Nothin' Wrong with Me, Baby!"

Saturday, May 12, 2012


Dear Anabelle,

Today is the day that shouldn't be.  The day it was said was not possible.  The day it was said you would never see.  Today you are two years old.  On your Sissy's second birthday, I said to Daddy, "Let's have another baby."  A month later we were pregnant with you.  A month later the thing that happened to you that would change our life had already occurred.  You were no more than a tiny bunch of cells when your genetic sequencing was mis-written, resulting in the neurological disorders that you live with.  That we all live with.

A year ago, when I wrote your birthday letter (http://www.anabellerose.blogspot.com/2011/07/as-if-you-havent-heard-enough.html), I was still sad.  I was still angry.  I was unsure, scared and tentative.  I am still all of those things.  But this year has taken me on quite a ride of emotions and growth, in a way that was so different from the first year.  In the beginning, we had NO IDEA what to expect.  The doctors seemed to have no answers for us, they could not even tell us how impaired to expect you to be.  The neurologist gave you a 50% chance of walking by the age of three.  At two, you cannot support your own head.  We spent so much of that first year WAITING and WATCHING.  Grasping at every little skill you gained as proof that you were going to be "okay".  That you were going to be higher functioning.  That you would have any sort of independent functioning at all.

When you hit one year, though, it became pretty clear that this was not where your road was headed.  You had pretty much peaked, skill wise, and started declining.  You stopped wanting to eat by mouth and went to full-time tube feeding.  It was discovered that you didn't like to breath when you sleep and need oxygen available at all times.  These things were very hard for Mommy.  It was like having the rug yanked out from under me.  I realized that there would be no more moving forward, just a desperate struggle to stop from slipping BACKWARDS.  The first 6 months of year two were extremely difficult for me.  I felt helpless, I felt hopeless, I felt like nothing was going to bring things back to okay for our family again.

But halfway through this year, I woke up.  I looked at your beautiful, smiling face, so happy with your life, so content with everything that you were able to comprehend and realized that by being so unhappy, I was being the exact OPPOSITE of everything that you needed me to be.  And that your sister needed me to be.  That no fairy godmother was going to come along and wave her magic wand and make my life happy.  That the only one who could make my life happy was ME.  Because it didn't matter how sad or angry I was, it was not going to "heal" you, it was not going to move us forward as a family and it WAS going to bring down the people I valued the most in my life.  So I stopped wallowing and started looking for all of the positive in my life.  And I found SOOOOO much!!!

The other thing that happened partway through this year is that you found your mission.  Or rather, I finally realized what you were trying to accomplish.  I started recognizing how drawn to you everyone was.  There is something so magical about a baby who only knows how to smile.  A beautiful baby with kissable cheeks, springy curls and the longest, thickest eyelashes you will ever see on a human being.  Everyone wanted to know you, everyone wanted to help you, everyone wanted to be a part of your world.  You were featured in two local newspaper articles.  Our friends started a charity in your name (https://www.facebook.com/AnabellesWish) to help pay for your care and to assist with the needs of your friends.  We have made so many amazing new friends this year, many of whom know you only through the computer.  Every event we have held in your name has blown the doors off our expectations.  You are an ambassador.  You are an advocate.  You are an inspiration.  You are the embodiment of LOVE ITSELF.

I have made peace, Boo.  I have been able to let go of what I wanted for you and embrace everything that IS you.  Because you have SO MUCH TO OFFER.  Because I have seen how many lives you have touched, how many people hold you in their hearts, and I know that you will not slip quietly through your life and disappear.  I know your legacy will last far beyond all of us.  That I will never fully lose you, no matter where this road takes us next.

In this next year, I wish you health.  I wish you peace.  I wish you adventures in exploration of your little world.  I wish you deepening of friendships and I wish you new relationships.  I wish you life in all its forms.  And I thank you for choosing me to take this journey with you.  For your smiles, your nuzzles, your coos and your soft, sweet breath on my cheek.  I thank you for letting me be your mother.