Down syndrome from a father's perspective.

Down syndrome, Times Square, and the 2013 NYC Buddy Walk.

I don’t know if I have ever fit more into a weekend than my family and I just did in New York City. Being able to see Treyton’s picture on the jumbo screen in Times Square and participate in the 19th annual NYC Buddy Walk was an amazing experience. It was a fun weekend for our entire family; it was a time for us to celebrate the fact that Treyton has Down syndrome. It was also something that elicited some mixed feelings.

Starting to feel a lot like Christmas.

Do you remember the feelings of anticipation and excitement you had as a kid the weeks before Christmas? It seemed like time stood still for so long and then, BAM!!, Christmas morning arrived. That is how I felt with this trip.

It was the first week of August when we made the decision to go to NYC. During that six-week period I conducted a fundraising campaign (we raised $4,555), was interviewed twice on the radio, and Leigh and I were interviewed together on live television. We had to get airline tickets, hotels, and plan for transportation to and from the airport. I also tried to research some of the sights we wanted to see so it would be easier for our group of six to get around.

The actual time involved to complete the tasks wasn’t that much but during that six-week period there was very little time when I was not thinking about the trip. I love the opportunity to actively tell others about my experience with Down syndrome and raise awareness; however, the excitement level was quite a bit higher this year and the prospect of navigating my family through an unfamiliar city felt an awful lot like pressure. I really wanted this to be something we would all be talking about for years to come.

Three whirlwind days.

I feel like our trip began Thursday evening when we were interviewed on TV. I think it was more of an emotional drain than anything – not emotional as in I wanted to cry but more like nerves and excitement mixed together. It was fun and we tried to make it an event by going out to supper after and just having fun.

We had an early flight on Friday morning, we wanted to give ourselves as much time as possible in the city so we scheduled a flight that landed in New York by 8:15 AM. Treyton was excited to fly in an airplane; you would have thought he was an old pro. He and I sat together and by the time I got my seatbelt on he had already put his on by himself and was looking up at me.

We decided that Friday was going to be our best option for seeing the Statue of Liberty so after exploring Times Square for a bit we jumped on the subway and headed to Battery Park to catch the ferry. We toured the island around the statue and grabbed some lunch.

Saturday morning began with a feeling of excitement, our boy was going to be in the bright lights of the big city! We grabbed breakfast at the same little diner as the day before. Instead of the lox and bagel of the previous day I went for some eggs and corned-beef hash.

As we headed toward the viewing area in Times Square we began to see “teams” of people heading there with us. We found our place to watch and waited. Treyton kept a lookout for the various mascot characters walking around the area, he was curious but had no desire to get too close to them.

The video was about 18 minutes long and played twice back-to-back. You could hear the different groups cheer for the picture of their loved-one as it appeared on the screen. It was a cool experience. After the second showing of the video we headed to the buses the NDSS had to transport us to the Great Hill in Central Park for the walk.

After climbing the stairs from street level to the top of the Great Hill we saw tents, a sea of people, balloons, and just a lot of fun activity going on. The younger two got their faces painted, they made bracelets, had popcorn, cotton candy, and sno-cones. There was music playing, carnival games, and Treyton had a lot of fun with the giant parachute.

Just before the start of the walk I noticed a small group of people standing off to the side of the main stage. As I looked a more closely I saw that it was Savannah Guthrie from The Today Show on NBC. I had Leigh Ann take Treyton up to meet her, she was awesome! She took time to talk to Leigh Ann and Treyton and I saw her do the same with every person that approached her. It was a really fun event.

By Sunday morning it began to feel like we were in the middle of a marathon. We were tired but also did not want to waste our time in the city.

For breakfast I went to a deli around the corner from our hotel and grabbed some fruit and bagels. We had to check out of our room and leave our bags at the bell stand before we head out into the city. We walked down 5th Avenue to the FAO Schwartz toy store. Again, Wow! I had been to the FAO Schwartz in Chicago but this made that one look tiny.

From the toy store we jumped on the subway and headed uptown to meet a friend of mine from college. He and his family lived just outside of the city in New Jersey. We grabbed some lunch at the Shake Shack and ate it in Central Park. From there we walked to a playground where our younger kids could burn some energy. After we said goodbye we headed back to the hotel to wait for the car to pick us up and bring us to the airport. We landed Sunday night around 10:30 PM and were finally home by 11:00.

Good memories.

I kept my journal with me during the trip because I wanted to make sure I remembered as much as possible; there is a lot to remember. There’s the mouse running around my feet as I purchased metro cards for the subway. Then there is Treyton seeing the Statue of Liberty out the window as we headed back to the city and making an exclamation of recognition as he simultaneously posed just like the statue.

I remember the crowds cheering for their pictures and the crazy feeling I had when I saw Treyton on the big screen. I remember the face painting and Treyton having the time of his life running underneath the pig parachute as others waved it up and down. We had the cool experience of meeting some people from Florida that made the same pilgrimage. I can’t forget about Lindyn’s “elevator jumping” or Treyton picking up the plastic clapper toy and doing the motions for the song “If Your Are Happy and You Know It Clap Your Hands.”

There were also some times when we reflected on our journey with Down syndrome. There have been some hard times, challenges. But there was also a sense of renewed resolve. We have a mission. We are working to create a world where people like Treyton, individuals with Down syndrome are recognized as important members of our society and are given the opportunity to use their gifts.

A way of life.

This Buddy Walk event and the Step-Up for Down Syndrome event we participate in with our local association are great events to raise money and awareness. However, advocating for those with Down syndrome is a way of life for us. I, along with my wife and kids, are working to raise awareness about Down syndrome each and everyday. We are thankful for all of you that donated to the Buddy Walk and became part of this story. There is room for you to continue with us as our story unfolds.

The most important thing you can do is have the right attitude. It is an attitude that recognizes the value of all human life and the right each human being has to develop his or her gifts and abilities. From there you can help us put an end to the use of the “R-word.” It may be an old habit and you don’t intend to hurt people like Treyton but it still does. Next you can look for ways to help out families raising kids with cognitive disabilities like Down syndrome. Treyton brings a ton of joy into our house but at times we get tired too. There are a lot of families in this world like ours. Give them a hand.

Thinking local.

On October 12, 2013 the Down Syndrome Association of West Michigan will be holding its annual Step Up for Down Syndrome event. This is very similar to the Buddy Walk but it is focused on our local community. I am raising money for this as well although I have set my goal quite a bit lower than I had for the Buddy Walk. My goal is to raise $1,200 for the Step-Up event. Please consider making a donation if you can.

Also, we would love to have you join us at the walk. The walk takes place at Millennium Park in Grand Rapids on Saturday the 12th. It is a short, non-competitive walk. In fact, you really don’t even have to walk if it is an issue, you can simply join us for the celebration. You do need to register for the event – that can be done online by following this link or onsite the day of the event. Onsite registration begins at 9:30 AM on the 12th, the walk is at 10:30 AM, and the celebration begins at 11:00 AM. Please join us!