There are moments in this journey with Kay that still make me stop and think, “How is this our life?”
Our most recent one happened at GiGi’s Playhouse when we sat down with Fox 5 to talk about something that, honestly, still feels a little surreal: Kay’s picture is going to be displayed in Times Square.
When I first submitted Kay’s photo to the National Down Syndrome Society’s Times Square Video Presentation years ago, I always hoped that maybe one day she would be chosen. I submitted her picture every year because, in the back of my mind, I thought, “Maybe this will be the year.”
Then came the email. Congratulations. Kay had been selected.
Out of thousands of submissions, only 500 individuals with Down syndrome are chosen for the presentation each year. And this year, Kay is one of them.
I remember being absolutely thrilled when I found out. It was one of those moments where you read the email, read it again, and then just stare at the screen for a second because it doesn’t quite feel real yet.
Now, somehow, we are a week away from getting on a plane and taking Kay to New York City for the very first time.
Fox 5 Las Vegas recently came out to talk with us about the experience, and I loved that the story wasn’t just about a picture on a screen. It was about what that picture represents.
Kay is so much more than a diagnosis. She is five years old. She loves music, dancing, playing, cooking and being silly. She loves her service dog, Maeve. She has a huge personality and an even bigger smile. She has also faced more medical and developmental challenges in her five years than I ever could have imagined when I first became her mom.
Now we are getting ready to have her picture shown in Times Square. That is pretty incredible.
During the interview, we talked about inclusion and why opportunities like this matter so much. People with Down syndrome are not separate from our communities. They are our friends, our neighbors, our classmates, our coworkers, our family members and, sometimes, the little girl dancing around your living room in a tutu five minutes before you’re supposed to leave the house.
They belong everywhere. They deserve to be seen. They deserve to be celebrated.
I think that is one of the things I love most about this opportunity for Kay. For a few seconds on September 12, thousands of people in Times Square will see her face.
They might not know her story. They might not know that she has Type 1 diabetes. They might not know about all the appointments, therapies, school meetings, advocacy, late nights, scary moments and victories that have brought us here.
They’ll just see a little girl and her service dog smiling back at them.
And maybe, someone will stop and smile. Maybe someone will learn something. Maybe a parent who just received a Down syndrome diagnosis will see Kay and feel a little less afraid of the future. Maybe someone who has never known anyone with Down syndrome will walk away understanding that there is nothing to be sorry for.
That is what inclusion looks like to me.
It isn’t just putting someone’s picture on a screen. It’s making sure people are seen, valued and given the same opportunities to take up space in this world.
And this particular opportunity would not be possible without the people who have stepped up around us.
Our family has been incredibly fortunate to have people believe in Kay and want to help make this trip possible. From DSP Connections, who has supported Kay and our family along the way, to my dad’s union, Plumbers & Pipefitters Local 525, so many people have stepped up to help turn something I wasn’t sure we could afford into a very real trip to New York City. I don’t take that support for granted, and I am incredibly grateful for everyone who has helped make this experience possible for Kay.
Watching Kay’s story continue to reach people has been such a special part of this journey. We’ve had the opportunity to share her story through Fox 5 before, and every time we do, I hope someone watching sees Kay for who she really is.
Not a diagnosis. Not a statistic. Not a list of medical conditions.
Just Kay. A little girl who loves to dance, play, cook, laugh and live her life.
And now she’s going to do a little bit of that living in Times Square.
I still don’t think it has completely sunk in.
Our first trip to New York City is coming up. Kay, Grandma and I are going to watch her picture light up Times Square.
Five years ago, I was just a mom submitting a picture and hoping that someday someone would see the little girl behind it.
Now we’re packing our bags to go see her face in Times Square.
What an incredible little life she is living.
And what an incredible reminder that sometimes the moments you hope for quietly in the background eventually become the moments you get to stand inside of.
I cannot wait to stand there with her.