Charlie’s Gift

Preface

April 2009

Charliebirthdaycake4thAs I entered the colorful yet extremely loud party room at a nearby “My Gym” facility, I glanced over at the cubbies where rows of little pairs of socks and shoes were organized.   I quickly felt my stomach drop with a combined sense of nausea and anxiety.   I looked over at my young family following me through the door.  “Cmon, Charlie!  Ethan, our seven-year-old held his one-fingered hand in his younger brother’s two-fingered had.  We were there for Charlie’s fourth birthday party.  Our youngest, Savanna, was snoozing in her stroller and I wondered whether she would wake up in time to at least eat cake.

Charlie’s friends began to file in, excited to join in the fun.   Charlie and Ethan were already playing on the mat, andcharliebirthdaylittlegymsolohoop I was on edge.  Despite my own emotional growth, accomplished through literally giving birth to my difference, the act of publicly showing my feet was still a constant challenge.  I extended that self-consciousness to my boys and their very different feet.   I couldn’t help it.  I noted that at seven, Ethan was already both self-aware and self-conscious enough to have kept his socks on, despite the barefoot only requirement.   Charlie, at least for the time being, remained oblivious about his difference. 

CharliebirthdaywithethansocksAs I watched Charlie sit in the circle with his brother and all his friends and announce his name and age, I couldn’t help feeling grateful that for the moment, our lives could feel normal in public and my birthday boy could feel happy during his party.

 

 

 

 

 

It’s hard for me to believe that time has passed so quickly.  Yesterday was Charlie’s ninth birthday and last weekend we celebrated with his friends at a local sports facility.   As his friends from school and life gathered to join him in games of baseball and soccer, I stared across the indoor arena and felt a mixture of emotions.  The first was reflecting on a Facebook (private group) posting I had recently come across.  It was from a mom of a child with a limb difference who mentioned her nine-year-old son was having a hard time making friends, and wondering if anyone lived nearby that he could get to know.

Watching Charlie, surrounded by almost twenty of his nearest and dearest, I took a little pride.  Surely as a result of his flaunting mother and self-confident older brother, Charlie’s ability to approach his hand difference with grace and even sometimes pride clearly had a positive, downstream affect on how others perceived him.  I have always known personally, that the more comfortable you are with your own difference, the more other kids will move past the finger conversation.  Of course, I realize that is far easier when you have close family members similarly impacted to serve as guides.

However, I also couldn’t help but think back to the days of celebrating at places like “My Gym” where all kids were supposed to play barefoot.  How would Charlie feel about doing that in front of his friends?   Clearly Ethan wasn’t up to it only a few years older than Charlie so it isn’t hard for me to guess the answer.  And, if I am being truthful, I know that would still be hard for him.   He is quite self-aware and does not like unwanted attention to his difference.

Charliebirthday9with family april 2014I can relate.  As difficult as it was to get past worrying about what people thought of my very different hands, the ability to show my feet continues to be harder.   Today I can literally waive my hands in the air on a beach for a photo and post it to Facebook, yet I still find a barefoot visit to the pool excruciating.  So what am I still so afraid of?  As usual, it’s other people’s unwelcome reactions and stares that dampen my day.   I saw a perfect example this week watching a segment of Oscar Pistorious’ murder trial in South Africa.  In the courtroom, Pistorious removed his prosthetics so he was left sitting with his stumps exposed.  The response?  An audible gasp from people in the room.  My stomach turned.

This past week, David Brooks wrote an Op Ed article in the New York Times called, “What Suffering Does.”  While Brooks recognized that the main goal for all of us is to maximize happiness, in the piece he also considers how (experiencing) suffering, challenge or hardship can drag you deep into yourself, give you a more accurate sense of your own limitations, and what you can and cannot control.  Additionally, Brooks highlighted that when you are in the midst of difficulty, you feel an overwhelming, even moral responsibility to respond to it.  The reward is a greater sense of satisfaction than simply feeling happy for happy’s sake.

Brooks article got me thinking a lot.  Mostly that the most critical gift I can give to Charlie is to continue to help him explore the challenges and difficulties that come along with looking so physically different.    I need to keep it all real and be straight with him that flaunting my feet (in particular) in public can still be really hard and I have worried about those audible gasps too.  Sure, he might not be able to control the reaction of others, but I need to help him understand that on the other side of this difficult experience is a place of a deeper happiness than he would have ever otherwise have had without his genetic condition.

And so, as we sang “Happy Birthday” to Charlie and I watched him blow out his candles, it occurred to me that while Charliebirthdaycake9I wished him a very happy birthday, what I really hoped for him is to push beyond the emotional challenges of having a blatant physical difference and refuse to absorb external judgment.   (Ethan, by the way, is already there and flaunts his feet in public without hesitation– I couldn’t be prouder.)   Now its time for me to guide Charlie in the same direction.  That would be the greatest gift.  And, best of all, it is one present he could give to himself.

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