Wednesday, July 16, 2014


I'm not one to name drop.  The concept embarrasses me, except in the company of close friends or friends who have absolutely no idea what/who I'm talking about.  I've always been the one who was cool and collected when meeting or bumping into folks with highly-recognizable names, hiding my nervousness and possibly coming off as extra-aloof, much to my horror.  But I've had friends who gush.  Talk about horror!  I actually have felt sorry for them, wondering what the other thinks of them for being so over-the-top in their face-to-face accolades and songs of praise. 



Maybe I'm just a snob, a crappy friend, a bitch, whatever.  But for some reason my fear of outright rejection in pretty much any social situation has gotten the better of me and kept me pretty calm, if not painfully timid to the point of sabotage, keeping my own, true self well hidden below the surface where nobody even thinks to look. 

And then the moment is over, I bounce back, and it was like I was never even there, except in the cool, breezy rooms of my partially-constructed memory palace.

This past weekend, I was pretty star-struck at the National Down Syndrome Congress (NDSC) conference in Indianapolis, which I attended with my daughter and my mother.  I feel like age and maturity have provided me with the tools to function more effectively and efficiently when nearly overwhelmed with awe at meeting people I respect highly and feel I know so much about.  I'd originally planned to hide behind my kid, but she was so miserable and downright rude to everyone, I was left to fend on my own. 

Like I said, I don't like to name drop.  So I won't.  But I will say that rubbing elbows with such well-known scientists, writers, bloggers, founders, executive directors, self advocates, actors and doctors from the Down syndrome community was an incredible treat this year, even more so than in past years at NDSC.  I felt more of a connection as the names, mostly unfamiliar to me just two years ago, have bubbled up to the surface of my reality as a mother with a child with Down syndrome, as a person who continues to learn nearly every day, as a parent who is determined to do what it takes to ensure the health and well-being of my daughter into the future.  The names have become iconic, and important to me and to so many others.  They've become familiar and are respected by the community. 

As star-struck as I was, I actually felt a part of their worlds.  Down syndrome has brought all of us, lay-people and superstars alike, together into this club, this special place that supersedes title, education, socio-economic background, residence, religion, race, national origin... 

We are all the same. 

We are all here for the same reason.

We are brought together for our families, for our friends, and for those who have yet to discover this amazing place, but who will certainly be joining us in the future.

Rock stars of the Down syndrome world?  Yes, they exist.  But knowing that we all share common goals brings us onto the same playing field, creating a learning environment in which we gather and disseminate information, creating a sharing environment in which we expose our feelings, our hopes, our fears and our opinions (and appreciating differences in those opinions), creating a huge family, in which we care about one another.

NDSC Indy was a magical place. 

I'm not going to name drop, but I will say a tremendous Thank You to everyone I met, everyone I spoke to, everyone I listened to.  Every word was valuable, appreciated, absorbed.  Every interaction was special. 

Looking forward to doing it all again next summer in Phoenix.

May the stars continue to shine brightly.


Denise Mom of 4 Amazing Kids said...

I'm there next year!! It's funny your like my "star" person I wanted to hang out with!!

Meriah said...

I can honestly say that I felt that when I saw Sammi - Like, HOLY COW!!!!!!!!!! IT"S SAMANTHA!!!
- and then you!

xoxox m

Anna said...

I was so jealous scanning though Facebook and seeing all the photos. Maybe our home won't flood next year so we won't be under major amounts of emotional and financial stress?! Ha ha I do agree 100%. "We are all the same. We are all here for the same reason" it's funny how things can level the playing field so quickly isn't it?

Mark Leach said...

Well, I shamelessly name dropped on my blog, and your name was there because you are a rock star. It was funny, I had seen you and Samantha earlier and thought, "hey, that's …" and then you introduced yourself to me later that same morning. I'm glad you did. Thank you also for making the larger point about connectivity that we all share by being born into this cause.

Twilson9608 said...

I think it's funny that you said you tried to hide behind your daughter, who is stunning by the way! I feel more out going when I have my (youngest) daughter with me! I was there, by myself and was very timid. You and I actually had dinner together (in a large group), and I recognized you but was too shy to say anything because I couldn't quite place you. I noticed your daughter at the convention right away. Her long hair flowing all over as she seemed to be a little socialite! I remembered her from her IDSC photo, which was awesome! Anyway, sorry that I didn't introduce myself. Maybe next year! And I totally agree, it was a magical place to be this weekend! I can not wait for next year!

RK said...

It was a neat experience! So good to meet you for the quick minute! :) I'll take it!

Jenny said...

I have loved seeing all the pictures you guys posted of meeting each other on FB. Looks like you all had an awesome time :)

Kim Ludwig-Sharpe said...

I love love the pix you posted because I tried to match the face with the blog!! Name dropping is hideous!! However!!! I met Brett Farve and I think he fell in love with me!! It just didn't work out!! Smiles