Getting It Right

May 1979

Peter childI waited inside as my brother Peter’s friend from school, Tim, rang the doorbell.  I had already seen Tim walking across our grass from the circle we lived on in Urbana, IL.  I needed to act fast, so quickly dashed to the door before my brother noticed.  “Hi, Meg.  Is Pete home?” he asked.  “No.  You can’t come in, Tim.”  “There, that wasn’t exactly a lie,” I attempted to convince myself.   “Okay,” he replied as he walked away.  “Let him know when he gets home that I stopped by.”  I shut the door without a response.  As I walked back into our house, my older brother by only fifteen months appeared at the foot of the stairs.  “Meg, who was that?”  “Oh, no one, Peter.  Just a neighbor looking for Dad,” I replied, trying to not reveal the fact that I was literally lying through my teeth.

In reality, there was absolutely no reason that Tim shouldn’t have been allowed in to our house….other than the fact that I viewed him as a social outcast.  He was a total nerd.  Unlike me, Peter did not focus on what other people thought of him.  He could have just as easily been friends with the biggest jock in our grade school or the ugliest dweeb.  I, on the other hand, was consumed about what other people thought about me all the time.   My anxiety over what people thought  was in fact so acute I managed to transfer it even to what people might think of my sibling if he were to hang out with dorks.  Not only was I unwilling to be seen with anyone with any type of overt difference, I did not want to be associated with anyone that was considered, “less than,” in any way.  Not that I was necessarily the most popular girl in the school anyway.  But that didn’t matter; my goal was to assimilate.  To never stand out in a crowd (even though I did without even trying given my physical difference).  This was critical.  And so, by extension, I couldn’t fathom having someone like Tim come to visit my brother.  What if someone…anyone…. saw him at our house?  I shuddered at the thought.

 Although outwardly I was social and had friends, I was, in a word, pathetic.

IMG_5561Recently John and I took our family on a trip to Texas.  Although I know this is going to sound corny, the time spent together was simply magical.   As we began to climb down the fascinating interior of the Caverns near San Antonio, I looked down at my three children.  Ethan had been holding his finger in Charlie’s two-fingered hand to offer his younger brother stability down the wet, slippery ground.  Meanwhile, Savanna held my own one finger on my right hand tightly as John followed us all closely, camera in hand, taking fabulous shots of the scenery.   In that moment, I felt what can be best described as pure bliss; my skin began to rise covered in goose bumps from the feeling of being incredibly blessed.   Only a few minutes before I had noticed a little girl around Savanna’s age perhaps staring at us, or likely me and our boys.  It didn’t matter in those glorious minutes….. but it used to.

My greatest fear used to be that I would have children born with my condition.   But what was I so afraid of?  Thinking about all of my capabilities and accomplishments, it’s not like my road traveled has been a disaster or anything.  So what was I really afraid of?   The answer had much less to do with my condition itself, and instead more about how I might be perceived.   Recently, I read a New York Post article called, “The Gifts We’d Lose,” by Kyle Smith that was completely on-topic.  The article was about a mother named Britt Sady who loves her child Noah, a three-year-old born with Down Syndrome (“DS”).   Although the article focused on state legislation that might prevent people from terminating a pregnancy once a severe abnormality is discovered, I was taken with a related subject also covered.  “When does it get hard?” Sady asked a friend raising an older child with DS.  The response penetrated.  “If you don’t care too much what other people think….it’s all easy.”   In the article, Smith provided a staggering statistic: 92% of expectant mothers who obtain a certain DS statistic choose to abort.   He continued, providing the following rationale, which resonated. “Children are a status symbol that we love to boast about, and we fear that raising a DS child lowers our status, makes us pitiable.”

My Pictures0008This was my “aha” moment in the article.  Considering that I was the kid that was consumed by the opinions of others, this behavior would one day translate into my becoming an adult with a mentality of wanting the “perfect” child.    This outcome was essential to my belonging to “the right pack.”   But my desires and fortune were not destined to match, and Ethan arrived, one finger on each hand, two toes on each foot.   He was the epitome of imperfection in the eyes of anyone.  Yet finally, through the unconditional love I had for our son, I could see he was just as he was meant to be; he was in fact perfect.   After having him, I no longer could worry about what others thought of me, for it was no longer me, it was us.   Nothing and no one else mattered.  And so while I have been humbled by multiple messages from expectant mothers who have read my articles and blog posts, and decided to forego an alternative option in favor of keeping their unborn child predicted to be born with varying types of abnormalities, the irony of my impact on their decision does not elude me, given my own past struggles.

I used to think that my having ectrodactly was the reason I was so worried about how others perceived me.  But it turns out, that our lives living with such a blatant physical difference don’t set us as apart as I used to think.  Given the statistic quoted in the New York Post article, I am reminded that a significant majority are concerned with how they are judged based on the offspring they have, fingers or not.   Most importantly for me, I have learned that although I may have passed on my genetic condition to Ethan, that doesn’t mean he inherited my every trait.  I have not only noticed, but even applaud that as Ethan grows, he doesn’t seem to be consumed with the judgment of others….at all.  Although he has friends that he loves to play sports with that are “popular,” he is also the kid that will happily have the short kid, the nerdy kid, and even the kid with any type of mental or physical difference by his side.  Unlike many of his peers consumed with how many Instagram followers they may have, he remains unconcerned by the social implications of who he chooses to spend time with.  IMG_5569

Before having our kids, everything was all about me, and how my total package was perceived.   Was I hanging with the “right” crowd?  Involved in the “right” activities?  It all mattered.   It is worth remembering that when we have a child with difference, or even if they are born seemingly “normal,” it is time to finally let go of having to have everything go so right.  Instead, it is time to take their lead.  After all, if we think about it, they never think twice about the package we offer them, anyway (okay, at least not until they are teenagers).

Rather, they simply love us for us.  Mission accomplished.

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2 Responses to “Getting It Right”

  1. BethApril 19, 2013 at 6:34 pm #

    If only we could all be as self-aware. I know I say I love them all, but really, I LOVED this post.

    • MegZuckerApril 20, 2013 at 2:06 am #

      ah–but I think it took me years to get here! 😉 xoxo