Monday, June 30, 2014


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. 

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Would love to hear your thought, comments, advice, or emotional outbursts!

-xoxo Jamie