“Down Syndrome” isnt a bad word.

Its that time of year again!!  Rock your socks for World Down Syndrome day!!!  By this time you all probably know why its 3/21 but if you forgot, this day was chosen because Down Syndrome occurs when there is 3 copies of the 21st chromosome.  So we are three (and a little bit) years in to our journey with DS now and whats really been on my mind lately is that Down Syndrome is not a bad word.  You dont need to say it in hushed tones or with a sad or confused or embarrassed look on your face.  There is absolulrely nothing wrong with having Down Syndrome and there is nothing wrong with talking about it.  I am insanely proud of both of my daughters.  I am proud of who they are becoming.  I wouldnt change them for anything.  And that includes Lulu‘s extra chromosome.  If she didnt have it she wouldnt be her.  And if you know her, I’m pretty sure you love her.  She‘s amazing.  She’s seriously funny, shes smart, shes very very kind and tender hearted, shes absolutely beautiful and she is fiercely deterimined.  Literally, and I do LITERALLY MEAN LITERALLY, she can do ANYTHING in this world that she chooses to do.  She can go to college, she can have a career, she can live independently, she can get married....she can do whatever she wants to do.  I am well aware that years ago parents couldn’t say that about their people with DS.  BUT those days are gone and I say in all confidence that my crazy little chromosomally enhanced kiddo CAN.  People much stronger and smarter and braver than me have been fighting the good fight for our kiddos for so long that I get to say these things.  That my daughter can just be herself.  There is still work to do though.  There are still parents who get their childs diagnosis and cry.  I was one of them.  I was scared.  I didnt know what I know now.  So now that I DO know that Down Syndrome isnt a bad thing, I want to do what I can in my way to help the cause.  Mostly, we advocate - as I have said before - just by letting Lu be Lu.  We let her change people’s perceptions.  We put her out there in all the regular things.  But this brings me to my main thought these days. I want you to ask me about DS.  I certainly dont know everything....but I do know Lu.  I want you to ask any question, I want you to talk about it and say the words Down Syndrome if you need to as part of the conversation and not dance around it.  Because its not a bad word.  Because there is nothing wrong with having Down Syndrome.  Because there is nothing wrong with Lu.  Shes awesome.  When I say Down Syndrome or talk about it now my face lights up.  I smile.  Sometimes I still cry but its not in the sad way.  It’s because this child with her perfectly placed extra chromosome has changed my life.  Three of my now closest friends are also in ”the club”.  The awareness of others that being a part of this journey has brought me is priceless.  And mostly, its just Lucia herself.  I’m not ashamed of her 47 chromosomes, honestly most of the time we dont even think about it.  Shes just Lu.  And Down Syndrome is part of who she is.  Along with her gorgeous hair and sparkling personality.  SO, for this World Down Syndrome Day I would just encourage you to say the words.  To talk about it...how we are all more a like than different (shameless song and book plug!) to not be embarrassed to ask questions, to learn, to meet people with DS and get to know them.  It’s DEFINITELY not a bad thing.  And you will be a better person for it.  


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