Tuesday, July 31, 2012


I have been meaning to go to Fred's since the first time I heard about it, but today I actually remembered it was Tuesday before the day was over and made it there. Its a local restaurant that does a dance night, specifically for people with special needs, every Tuesday evening throughout the summer.

We got there when it supposedly started, which after almost 7 years now of living in Florida, I should know better. Nothing starts on time down here and everyone is always 10-20 minutes late. We were the first ones there. I sat down with my mom and my kids in the largest booth, right by the door and chatted with the waitress, amusing my kids with chocolate milk. From our prime location, I watched as family after family finally arrived, and almond eyes filled the room. I also watched as each one looked at our crew, searching for our connection to the group, and seemingly were puzzled why we were there.

A few looked extra hard at Fiona. I could see what they were thinking. The "maybe she has it... I can't really tell".

Its the one thing about mDs that gets to me. The irony of it all is that I PRAYED for this. I prayed that she would not have physical markers of Down syndrome, because at the time, in my mind, I was praying for her to be beautiful. Now not only do I know how ridiculous that is because my breath is often taken away by the physical beauty of those with an extra 21st chromosome, but I also feel cheated Fiona is left in the middle... not normal as far as normal standards and not normal as far as Down syndrome standards.

Once the music started and we hit the dance floor, all these over-reading-into-it thoughts faded away as the special needs community does what it does best... includes. With the security of my kids in arm, I danced to the point I had to search for a hair tie because I was dying from heat, something I would not normally do. Normally, I am super self conscience... I am the lame one who sits at weddings and watches everyone else dance. But not tonight. Not with this crowd. Because no one was watching anyone else. No one was judging or trying to be cool. They were simply enjoying the music and dancing with the moves that God gave them, and I was enjoying my kids and my friends. I stopped worrying if people knew or didn't know if Fiona had Down syndrome. So what if they didn't think we were part of the special needs group. We were having fun and enjoying company, simply because we are all humans, not because of our abilities or disabilities.

Me dancing with my girl and my boys attacking Kelle Hampton, who made me aware of this local event on her blog.
I know its crazy that I wish Fiona looked more like she has Down syndrome. But I fear that as she gets older and her behavior or development is off, that she will endure a different kind of ridicule. I fear that more people will be apt to call her out or make fun of her differences, where as if they could look at her and see her disability that they would more likely have an understanding and keep their mouths shut. Sometimes I feel like my thoughts just loop in a continuous circle. I don't want people to see her as different, but yet I do. I do not want her to be treated differently, but yet I do. I don't want people to look at her and stereotype or make assumptions, but yet at the same time, in a certain way, I do. It truly bugs me when I have to defend that she has Down syndrome. Mainly because it forces me to point out everything that is "wrong" or different about her, and I am forced to say things that I am fighting in my mind. Things such as explaining how certain things in life she may not be able to do because of hypertonia but yet I want to always believe and help her to live life like its limitless. These are things that do not matter on a day to day bases... things that seem so trivial in daily life, really non issues until you line them up and compare them to "normal".

I love looking through all the pictures on the different Down syndrome groups I am part of. Particularly IMDSA's. I look through the pictures and see, not only the grand spectrum of what Down syndrome looks like, but more, little girls that look just like their moms, or siblings that are undeniably related. When I used to pray that Fiona would not have many facial markers of Down syndrome, I feared not only of her not being beautiful, but her not looking like me. And she doesn't, but neither do my boys because my husbands genes are so stinking strong :) She is her fathers daughter, 100%... the triplet born two years and two months after her brothers. She is undeniably part of our family, even with her slightly almond eyes and low set ears (ears that are huge just like her daddy's).

The picture above is one of my favorite pictures of Fi. I feel like it captures everything about her. Her sweetness, her beauty and her Down syndrome. I remember being told when I first got her diagnosis how cute and amazing kids with Down syndrome are, but I really didn't believe it till I saw my baby. I hope that Fiona and our family can help show others what I needed personal experience to learn. She has taught me more about life then any text book possibly could have.

1 comment:

  1. I am just seeing this post now! Apparently I've been trapped and missed all sorts of happenings in blog land! I understand what you are saying. I hear all the time that Harper doesn't look like she has Down syndrome. It's a backhanded compliment. Most don't understand that we may want her to look like she has Ds. And I'm super jealous of Fred's. Maybe I'll start a Ds dance club in my house! And the pic in the bathtub.....reminds me of someone I know!


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