“What a leader needs most importantly is a strong spirit.” –Ethan Zucker
“Meg, I am sure the schools here can make special accommodations for Ethan, given the way he was born. Whether it is physical or educational assistance, your special needs child will be taken care of in our school system.” Still in only the second month of my maternity leave from my job in Manhattan, I had been strolling our first child, Ethan, around our neighborhood in Larchmont, New York. On my way back to our home, I had just run into a neighbor who was also a teacher in the local elementary school system. Although she herself had a young child, our unexpected meeting was the first time she had seen our newborn son. It had been a terribly hot and humid summer, and this day was no exception. Ethan was dressed for the weather, only wearing his light blue onesie. “What did you say?” I replied with an instant pit making its way deep into my stomach. “For your son, Ethan. I presume he will need physical help and I presume there may be some other delays…at least from my experience as a teacher I’ve seen that sometimes when there are physical issues they are also coupled with mental or other internal challenges.” In that moment, I (and not my newborn son) barely escaped without vomiting in her face. Instead, I recovered and quickly made up a realistic excuse to get away (it was time for Ethan to be fed….) and turned in the other direction. I desperately needed to get away from her and her judgment of my son.
That evening, I recalled the conversation from the afternoon with John, still visibly upset. He looked at me, and while I was expecting an inevitable, “How DARE she?” from my husband of almost three years and the father to our son, instead I got: “Meg, you’re going to have to lighten up. People are not going to know what to make of Ethan and, with the best of intentions….” I interrupted him, my face already wet with a flood of tears streaming down my cheeks. “But how dare she jump to conclusions about him and his capabilities?” Despite my own personal experience having the same condition, I was emotionally drained at the thought of a life parenting a child where people would take one look at his body and instantly assume he was “less-than.” And then, after holding me and providing the embrace I so desperately needed, John continued. “More than even I can do for him, because you both have ectrodactyly, Ethan is going to take your lead when it comes to handling these things. If you fall apart every time someone makes an assumption about his capabilities, then what kind of example are you setting for him? I know you have it in you to do for him what your parents did for you….to raise him to be confident and accomplished.” He summed it up with, “After all, I like to think you turned out pretty well. I married you, right?”
Last week Ethan attended the Jr. National Youth Leadership Conference in Washington, DC. Prior to arrival, all participating scholars had to write an essay about their definition of leadership. Ethan chose to write about President Franklin Delano Roosevelt, and how he embodied what a strong leader represents. In his piece, even before he focused on FDR, Ethan described how a leader must be able to connect with others, even those that may disagree with them, and that a successful leader must also have a lot of self-confidence. But, what struck me the most from his essay was Ethan’s belief that to successfully lead, one must have a strong spirit.
“Ethan, what do you think it means to have a strong spirit?” I prodded him later about his essay that evening before bed. “It means that despite what others might think about you, your ideas or goals, even when they don’t think you can succeed, you don’t get caught up worrying about it. FDR had an important plan, and despite how terrible the economy was at the time, he was committed to helping others. A lot of people assumed his ideas were not good, but he was willing to listen to the people that he disagreed with, and yet had confidence to continue carrying out his strategies. Despite the fact that other people assumed the worst, and that he would fail, he had the spirit to persist. He was a true leader, Mom.”
I looked over at our eleven-year-old. We both had together observed that FDR had spent much of his Presidency with his wheelchair hidden from the public. Together we discussed and happily acknowledged the fact that if FDR ran for President now, he could readily flaunt rather than hide his disability, and even win. Times had changed for the better from that perspective.
Although Ethan was off to spend the week in Washington at the conference, he had just recently spent the month at sleep-away camp. That experience was phenomenal for him. To our surprise one night the camp director emailed me with the title: “Get a Guitar,” accompanied with a photo of Ethan playing. Apparently he had spent weeks learning to play with one of his counselors. I was admittedly in a state of surprise and, after glancing at the photo, felt like I did the first time I saw Charlie catching a baseball wearing a glove: I simply never thought I would see the day. Yet he persisted. When we arrived the following week to pick Ethan from a month away at camp, his counselor took me aside. “Mrs. Zucker. You should be so proud. Ethan was an astounding camper and important to us all—he was a true leader in every sense of the word. First of all, he was completely committed to putting others at ease about his physical difference. When he explained that he had ectrodactyly and another kid looked confused, he would simply smile and say: ‘Don’t worry if you don’t remember what it is called. You can just call me the one-fingered dude if you want.” I grinned and he continued. “But besides that, based on Ethan’s willingness to try anything, his never say never attitude, his extreme confidence, he automatically inspired us all to approach life like he does. His strong spirit is contagious.”
As John drove us down to DC, and the kids were intently watching a movie in the van, I stared out the window, deep in thought. All of a sudden, it hit me. In my quest to lead our boys to be strong, confident young men, they have actually already ‘one-upped’ me. Through their own personal drive and determination, they had surpassed even my own expectation about what they might be capable of doing.
In that sense, they are already quite the accomplished leaders in their own right, even now leading me.
The morning we dropped Ethan off at the Jr. National Youth Leadership Conference, John and I decided to take the kids swimming at my parents’ pool at their place in the District. As I began to relish one of my all-time favorite activities, swimming laps, I noticed that Ethan quickly joined me in my lane. “I’ll race you!” I exclaimed, ready to let him beat me. Only, to my surprise, as Ethan began to swim ahead, I quickly realized that he had become quite the strong swimmer. Even as I tried my hardest, I was now forced to reckon with the fact I no longer was here to set the example– it was once again my turn to follow his lead.