Dear Down Syndrome,

The Mighty has asked everyone to write a letter to the specific disability or disease that you or a loved one is living with.  Here is my letter to Down syndrome:


Dear Down Syndrome,

I am writing you a letter, to say Thank You.

I want to thank you, first of all, for giving me the scare of my life that turned out to be not so scary after all.  When I found out that, upon Benjamin's birth,  you were going to be a permanent part of my life as well

, I was terrified.  However, you are like the best haunted house i've ever been to.  You scared the crap out of me, made me question every action I had ever taken to get to where I was at that very moment, and then came out from behind the scary black wall to give me a hug and say, "I was just messing with you, don't be scared!"  You were like the terrifying horror flick that has a surprising twist at the end that turned into the feel-good hit of the summer.  I love a good scare, so for that, I say "Thank You".

Thank you for the awareness and clarity you have brought into my soul.  Down syndrome, before you were in my life I didn't know what it truly mean to be aware.  It's true, like so many say, that I never did anything intentionally to hurt others, but hurt others I did.  I used words, and phrases that made others feel less than without realizing I was doing it.  I judged others and situations without truly understanding what it was that they were going through.  Thank you for opening up my my mind, my heart, and my soul to truly begin seeing myself and others with a new truth.  Thank you for leading me down a path to a person who, today, is very aware of the words she uses, the path of the people she sees, and the beauty that is the world around her.  I am still not perfect, but with you by my side I know that I will continue to walk this path becoming more aware every single day.

Thank you, Down syndrome, for my friends.  Because of you I have met so many amazing new people!  I have met Mamas and Daddies from all over the world whose lives have been blessed by you and they are an inspiration!  Thank you for leading me to this community of hope and love that has been my rock through every hurdle Benny and I encounter.  I can't imagine going through life and not knowing about all the wonderful people and the wonderful things they do to educate the world about you.

Thank you for making me smarter.  Thank you for making me be super diligent, something I never was before for myself, about what I cook, what products I buy, how much exercise we get.  I am better at paying attention to what goes on at the doctor, understanding medical terminology, and knowing warning signs of thyroid issues.  I am smarter, which makes me a better Mama, and I thank you.

Thank You, most of all, for every single way in which you make my Benjamin different.  Thank you for his beautiful eyes, his super-flexibility, and his cute little simian crease.  Thank you for giving me the opportunity, that most parents pray for, to keep my baby a baby just a little bit longer than most. Thank you for the extended nursing time I probably wouldn't have had without you.  Thank you for the slow progression into knowing what it's like to have a baby "get into things" and allowing me to just enjoy sitting and playing with him on the floor. Thank you for being a part of my Benny because he is just perfect, and without you he wouldn't be him.

Love Always,

Jamie Freeman

Benjamin's Loving Mama & Down syndrome's Biggest Fan

Why Do They Stare and Do I Care?

I'm going to start this post by admitting that I, Jamie Renee Freeman, have never, EVER shied away from attention.  EVER.  I did theatre and some other acting for most of my life and loved the spotlight more than I sometimes care to admit.  Sigh...  We all have our flaws, right? :)

This being said, I don't always know how I feel about attention aimed at Benny.  On one hand my proud Mama self thinks, "YES, my baby is adorable and I know it!!!"  Then there's that other hand...the less optimistic hand....that thinks, "Are you staring because you think there's something up with him?".

Saturday, my husband and I took Ben to Panera for lunch while we were out.  For those of you that have met Benny in person, you know that he is just one happy dude.  He is VERY happy, but not necessarily quiet.  He draws a LOT of attention!  Anyhow, we were sitting smack dab in the middle of Panera eating our lunch.  Ben was happily making noises here and there squealing and giggling, but mostly just allowing Mama to stuff his face.  Boy likes to eat, and he was a BIG fan of the turkey chili!  All the time we were there, I just couldn't help but notice the massive amount of people that would just stare at him.  Like, REALLY stare, for a long period of time, and keep looking back again and again.

It all started when we first got there and I took him to the bathroom.  There was one lady we passed that did a double take on us as we walked by her.  That one kind of caught my attention, but I didn't really think too much of it.

Then, on our way back from the bathroom, she was staring again.  She continued to stare off an on at us throughout the entire time she was there.  We outlasted just about everyone, as Ben takes an extremely long time to eat now that we are in the world of big boy food.

Throughout the course of our lunch, there were many folks staring.  There were too little elder ladies that would stare, talk, stare again.  A mom with her kids just in front of me would look, smile, look away, then look again.  Two other families that came in and left that were kiddie corner to us that kept staring and smiling...you get the drift.

My immediate feeling when I see people staring is pride.  I see people staring and smiling at Ben, and my chest wells up with Mama pride because I just KNOW they are staring because he's the cutest thing in there.  I just KNOW they are getting a kick out of him smiling at me during his wide open-mouthed chewing as I open and close my mouth saying, "CHEW CHEW CHEW BENNY!".  I just KNOW that when he claps after every bite they are melting just like I do at the sheer adorableness that is my son.

I just KNOW!  I just...know.  I just... I....  I don't know...

Then the doubt creeps in.  "Are they staring at Benny because he's cute?  Do all babies get stared at like this?  They've been staring a LONG time!  They're staring because he's different aren't they? They are staring because they know something is different, and they perhaps can't quite put their finger on what."

This is what happens in my mind.  I don't know why.  I REALLY don't.

However, here's the funny thing.  I don't care.  I REALLY don't.  If that's why they are staring, then stare away!  Whatever...go on with your bad selves!  Don't get me wrong... I notice.  I note it in my head, but then I simply move on.  I need to be aware of things for Benny, but at the same time I just plain ol' don't give a crap.

The truth is, that regardless of why they are looking, they are looking at Ben.  They are looking at Ben because he has captured their attention with his magnetic personality.  They are looking at Ben and they are seeing a healthy, happy, BEAUTIFUL baby boy!  They are seeing a happy family eating lunch with that beautiful baby boy.  They are seeing a very important truth that I hope to one day show to the whole world.  That truth is that Benny is the best damn thing that could have ever happened to Mark and I.  The truth is that Down syndrome is not a curse.  It is not a burden.  It is NOT the end of your lives.  Most of all, it is definitely not a situation that requires any type of pity.

So, if you were in Panera the other day and saw that happy family eating (loudly) in the middle of the dining area, I hope that Benny put a smile on your face.  If you were trying to figure out if he was different, he most certainly is.  You'd have to be the best kind of different to capture the attention of an entire restaurant and leave most of them walking away happier than when they came in.