Indy 2014–NDSC Convention

Welcome back!  Do you know how many times I tried to post over the last few weeks?  It wasn’t for lack of anything to talk about. No trust me, I have experienced so much in the last few weeks that I could have easily had four posts…now I suppose I will try to jam it all into one, maybe two.

Take a small step back in time with me as I traveled to the National Down Syndrome Congress (NDSC) Convention two weeks ago in Indianapolis, IN.  I traveled with my sister Erika to help get 47 Strings:  Tessa’s Special Code into the hands of those who were looking for something just like it. Although I did not attend any sessions, I did see and learn so much from our small exhibitors table. NDSC table indy 2  NDSC table indy I saw familiar faces from Denver, and they shared stories of where the book has gone in the last year with them.  More than pride, I am honored to know that one special night in our home that took place just over two years is filling hearts and homes and schools and libraries and hospitals, etc.  47 Strings:  Tessa’s Special Code is giving people comfort and one kick ass reason to celebrate the beauty in what is different.  If I do nothing else while I am alive, I would die happy knowing that our story helped someone else feel the same way.

That is the exact reason why I love the NDSC Convention as well. Each year is a new platform from which we can only rise up.  We are all there for the same purpose:  to learn, grow, experience and celebrate.  For families like mine, who have a loved one with Down syndrome, the convention gives us a chance to be surrounded by people who can totally relate.  No where else have I been able to so easily talk about the ups and downs with so many people at once.  I matched Facebook profile pictures with actual people and visited with long lost friends.  Plus I seem to always have a great time which is just an added bonus.

This year we met many young adult self advocates, and for whatever reason they seemed to really enjoy the company of the Sullivan sisters at table 20.  Take Sean for example.  We had just arrived Thursday afternoon to the exhibitor’s hall where we could begin assembling our booth space.  About two tables down was a young man who noticed us immediately.  He stopped his conversation with those around him, shot us a huge wave and headed straight toward us with welcoming hugs.  He introduced himself, his iPhone 5 (which had a sweet wallet cover) and informed us that he was in fact single.  Shortly after meeting Sean we met his mom who shared probably twenty minutes worth of hilarious stories of Sean through the years.  Over the next couple of days, we looked forward to seeing Sean and hearing about his hilarious convention experiences.

Then we meet sweet Tess, who couldn’t help but notice that my daughter’s name is Tessa.  Tess’ mom was also selling her books at another table, but Tess spent most of her time collecting items from each booth and making hundreds of friends.  Everyday, and about three times a day, she would stop by our table and grab one of the blue and yellow Down Syndrome Awareness silicone bracelets “for a friend...” she would say as she glanced at me knowing that the bracelet was not going anywhere but to her vast collection of goodies from the weekend.  She probably has fifteen of them.  I can assure you that out of all of the friends I spotted her with, not one of them was wearing one of the bracelets she took for them.

I saw Rebecca, the Texas artist with a soft spot in her heart for a guy named Todd.  She was also my booth neighbor last year so it was nice to catch up.  We met Sam who graduated from college and told us what it was like to live on his own with his two wild roommates. He holds a steady job and volunteers in his spare time.

We stopped every parent with a baby or toddler in tow so that we could dote over their sweet babe.  The babies took me right back to when Tessa was an infant.  I could see myself holding her, rocking her and crying over her–wondering what life would be like for her.  I saw the look–that same concerned and overwhelmed look that adorned my face for months–on many new moms there.  Then again, I also saw it fade away each time they passed by as the weekend moved on.  With every conversation I had with young kids and adults with Down syndrome, the more I saw Tessa flying forward in her life.  I know in my heart that she is here to do great things.

The whole time I kept wishing that Tessa was there.  How she would have loved it!  Especially when Erika and I caught ourselves in the middle of the convention dance on Saturday night.  Erika was sucked into a massive conga line while I was trying to help our friend Tess find someone to dance with.  We could not resist a dance selfie in the midst of so much awesome.  One thing I know for certain is that somewhere on that 47th string is a dance gene that the rest of us with 46 strings did not get.  And that, my friends, makes me jealous. NDSC Dance I guess you could say that I am already preparing for the NDSC Convention in Phoenix next year.  Umm hello?!  I think I might skip a year with the book and attend sessions with my girl Tessa.

Who am I kidding?  I am definitely going to need another post.  No way could I fit everything in one.

If I met you in Indy this year or if you purchased a book, let me know how your book experience has been so far in the comments section! ~

Indy, here we come!

Happy 4th of July week!  We are preparing for our holiday weekend, and I can already tell that it is going to be great!  I have been on Pinning red, white, and blue themed desserts-that I certainly won’t have time to make-the last few days.  While I probably will not even end up attempting anything fun of the sort, it sure is making me feel festive!  I am heading to the dollar store later to stock up on all sorts of prideful decor for our campsite.  Bring on the chincy paper stars, confetti, sparklers and the beach because this chick is about to get real American this weekend!



I leave later next week for the National Down Syndrome Congress Convention in Indianapolis where I will be set up in the exhibitors hall again.  My dear sister and co-pilot Erika will be making the trip with me.  Who doesn’t love a good sister roadtrip? If we make it there even close to what Google Maps says, I will be thoroughly impressed!

I am especially excited to see old and new faces, to meet new parents, families, friends and share the joy of 47 Strings:  Tessa’s Special Code with as many people as possible!  We had such an overwhelming response in Denver last year that it is hard to not look forward to Indy next week!  Of course I am nervous. That will never change.  It is a good nervous though…like first-date-nervous.  You know, the butterflies in your stomach, eager and anxious type. Because I hope more than anything that I can send a take-away with those that I meet that leaves them feeling empowered and excited whether they have been walking this road for years or are just taking their first steps.  I want to make the marks that were so deeply embedded on my heart when I started out.  That is why I am where I am today, spreading this message so dear to me: that we do not have to fear an extra 21st chromosome.  

I am coming into this convention with one more good year under my belt.  We learned a lot from Denver last year and are better prepared for this year!  We will have PLENTY of books on hand, organization info packets, fundraising opportunities, DS Awareness bracelets, etc.  We also have a beautiful brand new upright banner that will help make us easier to fine, and of course…tons of pictures of Tessa!  Please remember that a portion of all sales go directly back into the Down syndrome community to help furnish the goals that we are all working toward:  achievement, acceptance and opportunity.

Tessa will not be attending the convention again this year.  I know many people were hoping to meet her, but unfortunately it is too soon after treatment.  She still does not handle large crowds well either.  I can always hope for next year!

Indianapolis, I hope you are ready for us…because we are ready for you!  If you will be at the convention, please stop by and say Hi!  We would love to see you!