By Trotter Cobb
The adventure began with a train ride. My wife Anne, my DYRK1A son Trot and I decided to take a train from Birmingham to New York City instead of flying. Sure, flying would have been easier, but there was something magical for me about the idea of a train ride.
We were hurried and frantic when we got to the train station. Once we boarded, we were taken to our room, which would be our home for the next 22 hours. We tried to relax, enjoy being with one another; Trot, a curious guy in his 20s, played with his iPad and we settled in for the long journey north.
A few hours after dinner, it was bedtime. When you go to bed on a train, you lay down knowing that the world is passing by right outside your window.
PEACEFUL FEELING
For me, it was an incredibly peaceful feeling; fulfillment of a longing I had had for years, a time for me to just enjoy life. I thought about how lucky I was to be able to take this trip with my wife and my son.
The train ride met my expectations. I was relaxed and able to take in the landscape. It felt as if I were suspended in time.
When I was growing up, my mom and dad used to tell me wonderful stories about trains — they took the train a lot because my mother refused to fly. My mom always told me how great it was to spend the night on a train — the “clickety-clack” against the tracks lulls you to sleep. She was right.
While the journey north was enjoyable for me, the train ride was less enjoyable for Anne and Trot because their sleeping accommodations weren’t as comfortable. Their disappointment made me feel less excited about the trip. Anne really wanted to fly to New York City, but I pushed to ride the train.
It was an adventure I wanted to share with my family, but my family ended up not sharing it with me in the way that I had imagined.
We arrived in New York City and faced new hurdles. Our Uber didn’t show — it was a madhouse trying to get a cab. Plus we had five suitcases. And it was pouring.
Getting to the hotel was additionally stressful. I was frazzled and Trot and Anne were as well. We ended up spending the afternoon and evening in the hotel. The first day was basically a bust because of the weather. But the highlight of this long, tiring day was meeting the hotel’s concierge.
We quickly found out we had something important in common.
The concierge had a great personality, someone who you just enjoy talking to — she was warm and helpful. But you often can tell when someone has a sadness about them and I sensed that in her.
HAVING AN EFFECT
I could tell that my son Trot, with obvious special needs, was having an effect on her. We were talking to her about what we were going to do during our visit and the conversation began to deepen.
It turned out that the concierge had a special needs son a few years younger than Trot and she was carrying a major burden.
She and her husband had divorced and her son was struggling in school — she was not receiving the support she needed from her local school system.
We live in Mountain Brook, Alabama where special needs education is so great that people move to the community specifically for that reason. We are also part of our wonderful DYRK1A community!
From what we could tell, this woman lived in an area where special needs is not a priority.
When we were talking with her, trying to share our own experience to hopefully help her, Anne and I forgot about our stress and concern over our trip being disrupted.
After speaking with her for a bit, we went up to the room and I remembered that I didn’t tell her that Trot, like her son, is an only child. With having an only child who has special needs, there come unique worries and concerns about the future. Who will take care of them? Where will they live? I thought about it and went back downstairs immediately to tell her.
Speaking to her made me feel connected. And I felt grateful for the special needs resources that were available to us back home. Yes, we were frazzled and hassled, but I felt so content and engaged talking to her, because the parents of special needs children share a special bond. I felt that I had helped her and she had helped me.
Here, in the middle of New York City, I felt so at home because we were talking about the thing closest to my heart — special needs families and the challenges we face. The ongoing conversation with the concierge also reminded Anne and me about the depth of our relationship and shared lives as the parents of Trot.
At one point in our conversation with her, I saw out of the corner of my eye Trot talking with the hotel doorman. Nobody was in the lobby — there was a lull in its usual buzz. I had been so concerned before the trip that Trot would be in someone’s way or he would be bothering someone — New York City moves so much faster than Birmingham.
I saw Trot talking to this hotel staff member. They were bonding. I was relieved. Watching the two of them talk reminded me that Trot connects with people, he draws them to him, and, because of this, I believe that he will ultimately be okay.
I felt like my family was starting to have a great experience in New York City. In some ways, it was even better than seeing the sites.
PS The train ride home was great — and thankfully everyone was happy!
(Trotter Cobb, a retired businessman, lives in Birmingham, AL. You can learn more about Trotter’s family and his writing by going to http://www.trottercobb.com/)