Awareness

Have you ever really thought about what awareness means?  In terms of all these days, weeks, months, and colors that are supposed to bring "awareness" to something, what exactly does "awareness" mean?  I, for example, have participated in countless activities that were raising money for "awareness".  I've done the Breast Cancer 3-Day to bring awareness for Breast Cancer, and I've done 5K's for Autism and Alzheimers, but what exactly happened?  Who became more aware and of what did they become aware of because of my efforts? 

Every year my theatre group puts on an award ceremony to toast and award the standouts from the ending season.  At this year's Betty Awards, as they are called, I had a moment.  This moment happened during a conversation with a woman I admire very, VERY much.  Lindy Bruton, who was an amazing mentor to me in my early 20's, said something to me that I will never forget.  She was talking to me about my blog and said, "Your blog is changing the way everyone in this group thinks.  You are changing the way they see by sharing your beautiful boy.  I am so proud of you.  Keep going!".  I immediately started crying (shocker for me, I know).

I kept thinking about what she said for the rest of the night.  Am I really changing the way people think?  Am I really changing the way they see?  I am just writing.  I am just writing my thoughts, my feelings, and telling my story.  But why?

Down syndrome is not some big mysterious thing.  People are aware of it.  Before I had Benny, I knew what Down syndrome was...or did I?  I thought I knew what Down syndrome was.  I thought it was something to dread.  I thought it was a severe mental illness that meant you were doomed for life.  I thought having a baby with Down syndrome would be one of the worst things that could happen to me.  I thought it meant being "burdened" with your child for the rest of your life.  So, looking back, I really had no freaking clue what Down syndrome was at all.

Today, I know EXACTLY what "awareness" means.  It doesn't mean knowing that something exists.  It is so so so much more than that.  Awareness means being aware of what exactly something means and not being ignorant to the truths surrounding it.   I know that every single fundraiser, walk or run I do in the future will have much more meaning to me now.  It will have more meaning because I am going to pay attention to what people are trying to open my eyes to.  I want to SEE what they want me to see about their cause. 

If I could put into words exactly what I mean when I advocate for Down syndrome awareness, I would simply paraphrase Lindy one more time.  I want people to change the way they think about Down syndrome.  I want to change the way they SEE by sharing my beautiful boy.  I don't want anyone to ever fear this diagnosis the way I did.  I want them to open their eyes, their minds, and their hearts to all the beauty inside the people who happen to have Down syndrome.  I want them to see these people, and not just see their diagnosis.  I want people to see Benny.

The next time you see a sticker, or a sign, or anything trying to bring awareness to something, try to think about exactly what that means.  It's funny because for me, Down syndrome awareness means looking at Benny and being less aware of his diagnosis and more aware of those cute rolls of chub. 

Thank You Lindy. 

We Todd Did

I remember a joke that went around a while back.  I think I was a teenager at the time, but I don't remember.  In this joke you wrote some words down on a piece of paper and had someone read them. The words were, "I am we Todd did.  I am sofa king we Todd did." The "joke" of it was that if you said these words out loud, you were saying something that you should be genuinely embarrassed to say.  What am I embarrassed about?  I am embarrassed that I laughed at this joke and many others like it.

My son, Benjamin, is 10 months old on Tuesday.  In case you are new to my blog, my son has Down syndrome.  He is the most amazing thing that has or could happen to me in this life of mine.  I am truly, TRULY blessed that he chose me to be his Mama.  To my little bug, my life is complete because you are mine.

Shortly after my son was born, there was this awkward thing that started happening.  Every time someone around my husband and I would use the word "retard" they would immediately apologize to us.  My response has always been, "It's ok.  I used to say it too.  No big deal.".  Unfortunately, that part is true.  I did say it.  I probably said it more times than I realized.  Never,

EVER, did I say it to diminish another person, but I said it.  I said it, and now I realize that regardless of my intent it still did some damage.

My first thought on the stance I would take on the R-Word was this.  I figured that if I used the term "Mental Retardation" in the clinical sense, it would take the power away from it.  If I used it in the "proper" sense, then it wouldn't become such an awkward thing.  I would take away the negative connotation and use it to describe the most basic of clinical things in regard to my child's health.  This seemed reasonable to me in the beginning, until I read an article recently about the House of Representatives removing the term "Mental Retardation" from law.  In this article they spoke to the question of "Doesn't taking a term out of law give the term power making it more of a slur?".  The answer to this question was clear.  As we evolve, so does our language.  People with Down syndrome were once referred to as mongoloids.  Can you imagine if that was still the case?  It started to make me think about other archaic terms.  Imagine if someone called me a wench and thought that was ok.  At one time, it was perfectly acceptable to use this and many other derogatory words for women.

Once I began being honest with myself about the R-Word, it really got me thinking?  Does it bother me?  I thought back to all those awkward moments where someone had said it in front of me.  I don't think I ever would have even noticed before, but now I ALWAYS notice.  Every single time someone says that word there is a quick stab of pain that goes through me.  There are thoughts that go along with that stabbing that make me realize that this word will most likely be used to describe my son at some point in a horrible way.  That word is going to be used to make fun of my sweet little boy.  That word is going to hurt him.  That word is going to be said and used in jokes like the one this blog is titled with and the butt of that joke is my baby boy.  That word is an instantaneous reminder to me of every potential moment in Benny's future where someone will hurt him with their comments.  Once again, I need to turn my defense mechanism of burying any bad feelings off and look at them straight in the face.  If you use the word "Retarded" around me in any manner, if I use the word "Retarded" to describe something clinical, if anyone on television, radio, or the movies uses the word "Retarded", it will be an instant reminder to me of the pain my son might have to endure.

I apologize to anyone that I ignorantly hurt in my past by using this word.  I promise you that if I would have understood what people could feel when that word is used, even if they aren't meaning the word to be offensive, I would have stricken it from my vocabulary a long time ago.  I am so, so sorry.  I am especially sorry that it took me so long to get here.

This being said, here is my stand.  I am going to end the R-Word.  It is going to be erased from my lexicon to be never used again.  As for you all, I implore you to do the same.  I implore you not because I think you would ever use it in anger, or as a jest, but I ask you this to give all of us special needs mamas and daddies a break.  I ask this to give anyone with special needs a break.  I promise you that we have a lot of internal battles to fight, so please find it in your hearts to not add one more with the flippant use of this word.  You have freedom of speech, and so do I, but with that freedom comes great responsibility to understand exactly what effect your words have on people.

After all, how could you ever want to hurt that face?

He's BAAAAACK!

My little guy has officially and finally snapped out of whatever was going on with him and I could NOT be happier!!!

Over the last couple of weeks, Ben has become himself again.  As quickly as that glazed over phase came on at 6 months, he suddenly snapped out of it at 9 and a half months.  CRAZY!  It was literally like night and day.  One day he was just staring off into space and sucking him thumbs, and the next day he was looking at me and acting all happy.  In the course of the last two weeks he has started doing new facial expressions including, but not limited too, a full on scowl when he is unhappy with something as well as a popping of his lips for no reason at all. Love it!  He has started making much better eye contact than he ever has before and just seems like he is 100% more aware of his surroundings and what is going on.  On top of all this, my little man has begun to ROLL!! WOOOOO HOOOOOO!!!  Yes, you read that correctly, Benny boy is finally on the move.  I could not be more proud of him!  I was so excited just a few weeks back that he was trying to roll for the first time, and now I can't keep him still.  Oh, my friends, you have no clue what a relief this all is.

If you follow "Ben Through It All", you know that we've had a rough time of it these last few months.  I've written multiple times about my little bug just zoning out.  It was right after his 6 month appointment that he just glazed over.  He stopped talking, smiling, laughing, and was just in his own world.  I'd be lying if I didn't say that I was terrified.  However, here's what I have realized.  I REALLY need to chill out!  I have been such a mess these last few months, that I have been a walking ball of stress.  Now, I am not saying I didn't have a reason to be worried.  I did have good reason, but that didn't justify how much I was affected by it.  My son is 10 months old, and my son has Down syndrome.  I cannot afford to let these things get to me like this.  I need to be aware of these changes, and I need to take action on them accordingly, but I still need to enjoy my boy.  I need to not let the worry consume me.  I need to take everything day by day.  Breathe...

I have a huge network of DS families I follow on Facebook, Instagram, and on multiple blogs.  These families are or have gone through so much more than I have had to face with Benny.  They have gone through feeding tubes, heart surgeries, eye surgeries, esophagus surgeries, etc., etc.  They are all so strong and so positive!  Some of them practically live in hospitals with their little loves, and yet they still stay strong.

For this reason, I am making a vow to myself and to my Benjamin.  From here forward, I will continue to be the best Mama I can be by taking care of you to the best of my ability.  However, I will remember that every day is a gift.  I will remember that we are going to get through anything that comes our way.  I will remember that burying my head in my pillow with worry will do nothing but cause me to miss out on the moments of beauty I am blessed with in my life.  I will remember that, no matter what, every little thing is gonna be alright.  I know I am not going to be able to live up to this all of the time, but I sure am gonna try!

As I was getting Ben ready for bed tonight, all of these thoughts hit me.  They hit me because, for the first time since he was 6 months old, he looked me right in the eye and smiled at me with his whole face and reached up at me.  Everything has been going back to normal, but that smile had not completely come back yet.  Different versions, yes, but not THAT smile.  Tonight, I got a Benny smile.  Then, he pee'd on me.  It seems I was so excited about the smile I forgot to put his diaper back on.  Whatever. What's a little pee all over the fricken' place when I have that beautiful little smile being given all for me!