March 13, 2013

I’m sure the majority of people that are reading this know me personally, or know someone in my family, or know a friend of a friend that maybe told you a little something about Liv Life or the Hubert family.  Hopefully you know why I’m writing this blog.  If not, let me give you a very brief explanation and introduce you to Livia.  On 7/8/09, then a mere 2 year old sprite, Livia was diagnosed with a terminal, genetic disorder called Sanfilippo Syndrome.  Most children do not live past their second decade.  She’s missing one tiny little enzyme that will result in loss of speech, loss of mobility, seizures, feeding tubes, and one day, take her life. 

The syndrome causes significant neurological symptoms, including severe intellectual disability.  The medical term for that; Mental retardation.

This is Livia

Livia has a unique way of getting people’s attention and holding on.  She looks into your soul with happy eyes knowing nothing but joy.  She loves contact.  Holding Livia was what I was created for and long to do everyday.  Livia is a human being full of life.

Early in her diagnosis, my defenses were way up.  When we were out in public, and people would stare at her not quite knowing if something was different with her, I would stare back at them.  No one ever noticed me staring at them, staring at Liv, but I always hoped they would catch my glare that would then confirm their sneaking suspicion  that yes, there is something different about her and OH YEAH, I shouldn’t be staring!  I still catch myself doing that at times.  Watching people stare at Livia.  I’m a mama Lion protecting her young, but now I don’t have anger behind that stare.  It’s more of, come, let me talk to you about special needs and I would love for you to meet Liv.  I guess you could say that I’m comfortable, content, and proud of my girl.

I do and will continue to feel some pain when it comes to Livia and people’s response or reaction to her.  It’s a natural response to feel some heart ache or disappointment when people’s intentions aren’t always fueled with love and understanding.  However, I’ve chosen to let that pain fuel me.  A full tank of determination to change someone’s mind about the reality of my life, my love, my Livia.  And really, not just Livia.  Any child or person with a difference, a disability, a story.  We are all here for a reason and everyone matters.

I was on Facebook today and saw something that appalled and disappointed me.  A disclaimer: I, Kelly Hubert, fully admit to having a potty mouth at times and am not naive or prude to today’s slang.  One thing remains; that dagger in my heart, searing pain I feel when I see the word “retard” or worse yet, “fucktard” used to describe a person or situation in a derogatory way.  Yes, “fucktard,” or fucking retard.  As if “retarded” wasn’t enough.  Mental retardation is a medical diagnosis used to describe, at times, a cause of another diagnosis.  Like in our case with Livia’s.  Sanfilippo Syndrome is slowly causing more and more of an intellectual disability.  Does this mean she’s stupid, worthless, or dumb?  When someone refers to a situation or person as retarded, that is the implication…..the stereotype.

It hurt me, like a dagger to the heart, but I wasn’t angry.  I was sad and disappointed.  This person is placing a stereotype on another due to their own misunderstanding and pain.  But in turn, it implies that my daughter’s disability makes her less worthy, not of value.  When really, she is everything and more.  I get to experience something magical and unique.  A beautiful life that is so full and rich.  A child that has taught so many how to LIV and make moments matter.  Making every minute worthwhile.

There is a website called “R-word | Spread the word to end the word.”  There is a pledge that you can take to help eliminate the derogatory use of the R-word.  It’s a resource to help educate others and keep yourself, and your voice, accountable.  Please feel free to share my blog, and the R-word website to educate your friends and family if moved to do so.