Thursday, April 26, 2012

Oh yeah, she does have Down syndrome

When I look at Sophia, I see the most beautiful blond haired, blue eyed little girl I have ever seen in my life.  She runs, she laughs, she plays, she destructs, she annoys her big sister, and she LOVES like nobodys business.  She is just, Sophia. 

Typically when I go out to run errands or take my kids places, 99% of the time I'm a hot mess.  I look like crap, my brain is a scattered mess, I'm juggling a diaper bag, snacks, toys that Jayden refuses to hold but insisted to bring and I just don't focus on anyone or anything around me.  My mind is set on what I'm there to do and then get the hell out of there and back home to our comfort zone of craziness.  So the stares or the looks or the judgment from other people, I just don't see it, I don't have time to pay attention to someone who is staring at me and my crazy kids.  But then there are moments when people have approached me, when we've been out to eat, or at the park and they notice Sophia.  They tell me how beautiful she is and ask how old she is and then they proceed to tell me about a special someone in their lives who either has special needs or has Down syndrome.  At first I'm always like, "wow, that's great!  Sophia is so specail to us and has opened up our lives and our hearts to so much more in life, and you must feel the same way about your loved one."  I really appreciate people taking the time to approach us and make a connection, even if it's only for a brief moment.  But then after the encounter, my immediate thought is, "how did they know?"  I'm sure it seems so silly to think that someone wouldn't look at Sophia and instantly see that she has Down syndrome, but for me, I hardly ever "see" it. 

These past 3 years seems like it's been so easy to forget that my little girl has Down syndrome.  Of course I'm not ashamed of it, I'm proud of that extra little chromosome and I have no problems telling people that she sports it.  I guess in the beginning we struggled with so much medically, that there just wasn't enough time to "worry" about a little extra chromosome.  And I didn't.  And honestly, I still don't.  I don't spend hours on the internet researching, which maybe I should?!?!  I don't talk about Down syndrome on a daily basis, or even a weekly basis and maybe not even on a monthly basis, but if I did, it would be perfectly ok.  I've just always put all my focus and energy on getting her strong and healthy.  But now we are fastly approaching the school age years.  Of course it's only preschool, but there will be teacher and peers and IEP's and people telling me that my daughter just isn't where she needs to be.  There will be people and situations always coming up that remind me that Sophia has Down syndrome, and that developmentally she is behind, and I think I'll be ok with that, I think.......

When I look at Sophia, I see a little girl who has fought, and fought hard to get to where she is today.  I see a little girl who is strong and stubborn and who is who she is, and there isn't anyone who is going to mold her into something different.  She is full of life, love and laughter.  To me, she is amazing.  I know it may take a little time and some difficult paths, but I feel like this Down syndrome thing may need to move up on my list of things to focus on.  I need to be prepared for the years to come.  I need to be able to fight for what is right for my daughter and get her the services and the support outside of the home that she deserves.  I need to be prepared to be her voice, her advocate.  Of course Down syndrome is a part of our lives, it always has been and it always will be, but for me, it's just not a big part of our lives.....and maybe it never will be?

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