“Tsk, Tsk. That must be so very hard for you.” The unexpected comment came from a stranger who had noticed my physical difference as my parents, brothers and I walked through a crowded bazaar in Islamabad. My heart sank from the audible reaction at the sight of my one-fingered hands. At just eight years old I had begun to realize that many Pakistani locals, complete strangers to me, felt like they could say whatever came to their mind about my difference. Back home in Urbana, Illinois, kids would certainly come up to me and ask questions, and sometimes simply stare. However, I couldn’t recall a single such encounter with an adult. Even my parents hardly raised the subject with me…well, unless I was having one of my pity parties. After spending the previous two years in the States, I had forgotten what it was like to receive such comments. Now we were living again in South Asia and I had to adjust. The comment in the bazaar triggered a similar memory from when we were living in Kabul, Afghanistan while I was in nursery school. There, on the street, outside Ahlman Academy, one of the employees, pointed at me and declared in broken English, “Such a shame.” I could still feel the sting.
“Mom, if you had the choice, would you prefer people tell you what they are thinking about the way you are born, like you told me you experienced in the Middle East, or is it better here, where people might be thinking something but they tend to hold back?” The question came from Ethan as I was driving him to middle school early in the morning, part of our morning ritual. Too old to have me hug and squeeze him and profess my feelings of love, at least in public, I waived to my seventh grader with a smile and shouted, “Good question. Let’s talk about it more later. Have a great day, E!” Ethan’s question lingered in my mind as I drove away but the answer came quickly. I did loathe it when adults treated me like I was wearing a sign that read, “Have one finger. Say anything!”
I had to tolerate it when we lived in the Middle East and South Asia because, culturally, it was normal for people to just blurt out their views.
Yet Ethan’s question was not so simple because now, as a parent of physically different children, the question about when and what to share with your own children had become much more complex.
The topic came to mind again recently when Ethan had his first soccer game of the season. With all that was going on, I had hardly focused on whether his new soccer cleats actually fit. Sitting in the hot sun on the bleachers alongside the field, I watched as Ethan’s way-too-large cleat flew off his foot following his attempt to kick the ball. Watching his frustration on the field, I flashed back to a completely unrealistic letter I wrote to Puma (the athletic shoe company) years earlier where I pleaded with them to consider making adaptive shoes for the wide, short unconventional foot (no response). Meanwhile, Ethan was determined to stay in the game, even though getting his shoe to stay on was proving pretty difficult. He knew how to tie his shoes, but couldn’t manage to do it securely. At one point, in front of his teammates and everyone else, he checked his pride at the sideline came up to me and asked me and his former coach who happened to be sitting next to me if we could help tie his shoes as tightly as possible. It has not escaped me that both Ethan and Charlie have (on separate occasions) informed me they are extremely slow runners while playing soccer. Every time they say it my heart breaks a little, knowing that if the other players had to play the game with ill-fitting cleats (and two-toed feet), that would level the playing field.
With the awkward shoe incident from the soccer game still fresh on my mind, I happened to read an article about a woman named Rebecca Alexander, who has an extremely rare condition called Usher Syndrome, for which there is little research and no cure. From the time she was a little girl, Alexander had increasing problems seeing. What she didn’t know then was that she was going blind and deaf. “Very early on,” Alexander says, “my parents had very different ideas of what I should be told.” According to a recent New York Post interview with Alexander, the author of a newly published memoir, “Not Fade Away: A memoir of senses lost and found,” Alexander’s mother wanted to tell her what they suspected was happening. Her father believed it was better to do it later, let her enjoy her childhood. I remain intrigued and plan to read her book. In particular I wonder what motivated Alexander’s parents to hold back telling her what was going on and why. At first I couldn’t help draw the personal comparison about our decision to inform our daughter Savanna she was adopted as soon as she was old enough to understand. However, it really is unfair to draw any such comparison. Savanna’s news was about her past; Alexander’s about her future.
But still, as we continue to parent our two sons, born with my condition, and as they mature, I have noticed a personal need to share more than before, especially with Ethan, now twelve. Whereas in the past I would have made sure to always present our lives and our differences positively, masking any signs of sadness, fear or anxiety, now I am beginning to realize it is time to keep it more real with my pre-teen. And so, after the soccer game, alone in the car together, I looked over at Ethan let him know exactly what was on my mind. “E, I am so sorry. Buying cleats that fit you and Charlie is really challenging, based on the way your feet are formed. There are no perfect cleats or shoes for the likes of people like us and I should have made sure before we left that they at least were tight enough to stay on your feet.” Ethan looked over at me, and I could tell from his expression he appreciated my candor. “Mom, don’t worry. We’ll try others and do our best for my next game.” He paused and then put his single finger on my shoulder and added. “Anyway Mom, the way I see it, with every negative there is about our condition, there are a thousand positives.” Not only was I stunned at Ethan’s ability to be so positive, it occurred to me I had been rewarded by my confiding in him.
The following week, as we got Ethan ready for his second soccer game (realizing that the prior week’s disaster was largely due to the top holes having not been laced), it occurred to me I owed Ethan an answer to the question he had posed on the way to school. “E, by the way, you asked me if I would prefer to know what people are thinking or if it would be better to have them keep silent?” He turned to me in anticipation. “I really don’t like when people feel like they can say anything to me, without any sort of filter. However, I suppose, as long as I am mature enough to handle the information and process it productively, I’d rather people say what they think. It beats not knowing.” And then, because now we were in the privacy of his bedroom, I followed up with a long embrace and whispered into his ear one of my favorite quotes, “Say what you mean and mean what you say because the people that matter don’t mind and the people that mind don’t matter.”