Taylor Darilek Koudela said experiencing New York with her youngest son Levi under the lens of the National Down’s Syndrome Society was an incredible, awesome experience. Not to mention spending that time with her mother and her best friend was truly the cherry on top.
“To be surrounded by people who have Down’s Syndrome or love someone with Down’s Syndrome, it was indescribable,” she said. “So much of my energy and thoughts are: will my son be accepted, and how can I make sure he’s included in things, and worried about whether he’s going to be accepted with open arms, and at this event, none of those thoughts had to take place, because these people love people with Down’s Syndrome or have Down’s syndrome themselves.”
Two weeks ago, baby Levi Koudela was on display with his smiling face on two Jumbotrons in Times Square, along with over 500 other people who have Down’s Syndrome at one of the biggest events the NDSS has hosted over the last several years.
For Taylor, when her son’s face appeared, it was overwhelming. For Levi…well, he’d been sleeping in his mother’s arms, so he was woken up right before, and seemed to be lost about what was going on.
“Standing in Times Square is already extremely overwhelming, in a good way or bad way, depending on the time of day,” Taylor said. “We were whooping and hollering when we say Levi, but seeing someone with Down’s Syndrome recognize themselves on the Jumbotron, oh my gosh, me and my friend were crying and so happy and joyful watching how happy and joyful they were.”
The NDSS also aired the video on Facebook, so Taylor’s family and friends texted her when they saw Levi on the screen. Paired with the event was the New York City Buddy Walk, which was a milelong walk in Central Park, plus lots of vendors, informational booths, readalongs, and people with Down’s Syndrome selling things they made, such as books, art, or jewelry.
Taylor also got to meet up with a new friend whose son was also named Levi. The mothers met online and said it felt like they’d known each other forever. Taylor also mentioned they visited the New York Public Library, which was on her mother’s bucket list, and saw Taylor Swift’s old apartment on Cornelia Street, which was on Taylor’s best friend’s bucket list. The group also went to Bryant Park, Washington Square Park, the Seaport District, the 9/11 Memorial and the World Trade Center, St. Paul’s Chapel, plus, one of the boroughs landed at the top of their favorites list.
“Brooklyn,” she said.
“We said if we ever come back we could leave Manhattan alone and go back to Brooklyn.”
Taylor said while in New York at the NDSS event, she was on top of the world. At times, her head has been filled with anxieties and worries about whether Levi will be included and flourish, but at the event she saw the same people who have those worries and turn out to have a rich appreciation for where they’re at in their life.
“Especially with things happening in the world, there’s always bad stuff going on and things going wrong, but I know how good it can be and what we can do to contribute to that,” she said.
“I think that I want people who receive a lifechanging diagnosis either for themselves or a family member…my husband, Clay, told me something that has stuck with me when we were pregnant, and told the diagnosis, and he said, there will still be magic,” Taylor said. “And it’s true. There’s a lot of stress and appointments but there is still magic.
Having that has made other things more magical, and I find so much more magic and joy in things that I didn’t before, and the little things.
“Having a son with a disability has given me a new lens, and I need people to know the most inspirational thing on this journey was given to me by my husband,” Taylor said, her voice breaking slightly.
To learn more about loving someone with Down’s Syndrome, or how to help, visit ndss.org.
