The Boy and the City that Never Sleeps

From the first week following the diagnosis, we purposed to make every day count. Asher had a bucket list of places he wanted to visit, and one of the cities that was high on the list was New York City. It was fitting for a kid that hated to sleep to want to visit the city that never sleeps.

My career had taken me there many times, so I felt comfortable navigating around the city. So on the first weekend of November, we planned and booked a trip, streamlining and packing the agenda because it was just me and Asher, and a long list of things he wanted to see.

With a little over three days of time to work with, we put a lot of miles on that wheelchair of his. We stayed at a hotel in Times Square, visited the USS Intrepid aircraft carrier museum, spent an afternoon at Spyscape, saw red pandas at the Central Park Zoo, and were amazed by dinosaur fossils at the Museum of Natural History. It was a blast.

When I look back on that trip, there is a deep fondness in my heart that is matched by few other memories in my life. There was no sadness. There was only adventure. It was the father-son trip of a lifetime.

And yet it was during this trip, that I was given first notice that the final stage was about to begin. A common neurological symptom - a kind of tremor - called clonus that had presented in Asher’s left leg months earlier, began to present in his right leg for the first time. Objectively recognizing it for what it was gave me more resolve to make the most of the time with him. Each time I would see his right leg start to bounce, I would think, “Make the most of the time.” And so we did.