Homage to Ethan

October 2004 

Ode to Ethan with mom 3“C’mon, Ethan, go ahead!” I belted from below, as my nanny Joan stood near him.   I had taken the day off of work in order to be home for Halloween.  Our two 1/2-year-old son was at the top of the slide at our local playground, and clearly intimidated by the other kids.   There were at least four of them.  Two older kids, perhaps ages four or five.  The other two looked to be around Ethan’s age.  As they would eagerly climb up to the top of the slide after having just sailed down with a clear expression of exuberance, Ethan purposefully stepped back to let one excited child after the other jump in front of him.

“Do you think he is afraid of heights?”  It was Joan.  “No, I don’t think that is it.” I replied softly.
Joan gave me a knowing look—after all she had been caring for Ethan while we were at work since he was six months old.


 OdetoEthan1Ode to Ethan 2

I knew height wasn’t the issue.  Since he was a baby, Ethan had loved going on any slide.  For the past two weekends, my husband John and I had been taking him to the same slide early in the morning, when no one in their right mind was up. 

Ode to Ethan with Dad 4Ode to Ethan just E -6

I also knew it since, of late, I had observed a new awareness in Ethan.  Although he was too young to fully appreciate the significance and implications of the fact that he was born with only one finger on each hand (and toe on each foot), it occurred to me that he was already observant enough to realize people were staring at him….a lot. I wondered if his timidity on the slide was a social reaction. 

Back on the playground, I watched Ethan step back as kid after kid passed him to slide down.  My heart started to sink and my anxiety rose.   If he turns out to be this introverted as he grows up, what would become of our beautiful son?  Although we both were born with ectrodactyly, I had the same parental fears for my kid as any 10-fingered parent would.  As crazy as I knew it might sound, I was terrified.  After all, I had lived with my own difference—but I certainly had never parented it.  I thought of  something that had always stuck in my memory….something my Uncle David said to me when I was a child.  “Meggie, I know it is harder for you than for your brothers since you were born looking so different.  But I just want you to know that I know you are going to be just fine.”  I looked at my Uncle intently.  “How do you know?”  He smiled at me warmly.  “Because honey, you are so outgoing.  The fact that you have such a sparkling personality and are naturally social will get you through it all.”  I needed that for Ethan.

“Come, sweetheart.”  I had climbed to the top of the slide, and grabbed Ethan’s sole finger in my own.  “Let’s slide down together.”  And with that he effortlessly climbed into my lap as we zoomed down.  To an outsider, this might have seemed like an accomplishment.  But I had a pit in my stomach.  I knew that for Ethan to succeed in life, he’d have to persevere and learn to navigate every experience with confidence, grace and independence.  I had to help him with all of that.  But just as importantly, I also needed to figure out how to encourage him to be an extrovert, like his mom.

 Ode to Ethan 9 tennisMom, you really are amazing!”  It was 8pm and I had promised Ethan a round of tennis when I returned from my work day in Manhattan.  We had just completed a set, and clearly his previous lessons had paid off.  I looked at him confused.  “E, what are you talking about?  You just whooped my butt!”  He laughed.  “Wait a sec—I think I’ll post this on the DHIFI facebook page!”  Instantly Ethan walked over to me, posed for the camera, and then offered his grin.  “Yeah, but when I think about it, how did you ever realize you were going to do any of this stuff?  No one else was there to show you, like you have shown me and Charlie (his eight-year-old brother, similarly born with our shared condition).”  He continued.  “Let’s face it Mom, you had to be extremely creative from the beginning.”  Ethan already had developed a knack for making  someone who might otherwise feel badly about themselves, feel good.    This time, I was the recipient.

Later that night, the impact of our conversation did not leave my psyche.  In reality, before I had my children, I lived my life growing up often hiding my difference when placed in new environments, and then only flaunted it once I was convinced that a person had become “used” to me.   But I was a naturally happy and positive kid; and just as my Uncle had predicted, my outgoing personality proved to be an asset.  I used to think that without one, a child born like me (with any type of blatant difference) was doomed.   But just like everything else, it’s just not that black and white.   And the person who has taught me about that more than anyone has been Ethan.

Ethan and I may look a lot alike but we are actually quite different.  Where I was extremely social growing up (er, almost too talkative), Ethan is simply friendly and available.  Where my trick as a child when meeting new kids was to rush up to meet them and get them to know ME quickly as a someone, not a something, Ethan possesses an inner strength that, at the same age, I did not have.  Ethan doesn’t focus his time on what others are thinking.  “What’s the point, Mom?  I can’t control what they are thinking of me anyway, no matter what I wear or say.”   I saw this attribute in him this past Spring when he kicked off the “Kids Flaunt” writing competition with me.  As he stood up in front of an entire school of children he had never met, wearing his, “Ten Fingers Are Overrated Shirt” and spoke to the kids about how much he values standing out in a crowd, rather than trying to conform, I swelled with pride.   Also, last month, Ethan walked into school with a pair of “fancy” sneakers, something many boys his age seem to focus on a lot these days.  One of the mothers of Ethan’s friends e-mailed me, asking when it was that Ethan finally succumbed to peer pressure and asked me to buy the shoes?  I was confused until I spoke to him later.  In actuality, I simply had been online and purchased six pairs of extra-wide shoes in his size, intending to keep at most two of the pairs that fit him the best.  Given his misshapen feet, I always buy whatever I think might fit in the hope that eventually I’ll find something.   In our world it is about what fits best.   Ironically, Ethan received so much attention for his trendy sneakers, he began to wear his second pair instead at school.  Through Ethan I have realized that the key to flaunting is not being overly social or extroverted to the point of distraction.  Instead, he is showing me that the true reason to flaunt is because it sets you free from anxiety and the never-ending effort to conform.   As he has also mentioned to me, “Mom, even when someone does fit in, then they have to spend the rest of their time worrying about it and making sure they still can keep that status.”

IMG_5075Today (June 21) is Ethan’s eleventh birthday, and it is also the day that his 5th grade class is graduating and heading off to Middle School.  In addition, we are so thrilled and honored that Ethan’s speech was chosen as the keynote to close the graduation ceremony.   In honor of both very special occasions, I penned the following poem to our son, who shines with a confidence that brings us joy every day. ethan speech photo graduation speech

My Dear Ethan: May you get everything your heart desires; not because it is something you want, but because it is something you deserve.  As Elizabeth Klein Shapiro wrote in a poem dedicated to me when I was born, “May your spirit dance on invisible toes.  Dear one, we are all born lacking.”  Happy Birthday E!  Love, Mom







Ode To Ethan

To my son, born a mirror image of his mother,

In the most important way.

You walk this earth so blatantly different

Than the rest.

You realize that people will come and go

And stare, but

You don’t care.

You live your life filled with an inner joy,

People would pay for in gold

And they will still stare, but

You don’t care.

You are special not in spite of,

But because of,

Your difference.

You are special because you will always stand out,

And because you realize,

There is no glory in fitting in.

They may always stare, but

You will never care.

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9 Responses to “Homage to Ethan”

  1. MegZuckerJune 22, 2013 at 3:47 pm #

    Interesting memory–he loved the slide

  2. Daniel ShapiroJune 22, 2013 at 2:28 pm #

    Just beautiful, Meg, and very moving. Congratulations to Ethan, and to you and John, on his graduation and all his accomplishments! Much love, Daniel

    • MegZuckerJune 22, 2013 at 3:46 pm #

      Thanks Daniel–means a lot and Ethan told me to tell you THANKS!

  3. elizabeth shawJune 22, 2013 at 2:05 pm #

    Meg….This is just so beautful! You ARE amazing and your kids are so lucky to have you as their mom! xo, Elizabeth

    • MegZuckerJune 22, 2013 at 3:47 pm #

      Thanks so much Elizabeth–definitely a labor of love…… 🙂

  4. JulieJune 22, 2013 at 3:10 am #

    So beautiful!!
    Julie and crew

    • MegZuckerJune 22, 2013 at 12:07 pm #

      Awww-thanks so much. I really appreciate the comment. xoxo

  5. Dana Risa Dinsmore (already a HUGE fan!)June 21, 2013 at 6:49 pm #

    God bless you BOTH – Meg and The Amazing Ethan!

    • MegZuckerJune 22, 2013 at 1:56 am #

      Thanks so much Dana–from both of us!