Archive | Down Syndrome RSS feed for this section

Hallie’s First Year

12 Jun

In memory it seems a time of fire.  The blood red sun sinking into the darkness of the city, the brutal heatwave that arrived with Hallie’s birth, the heat-dusted Hell’s Kitchen pavements I walked the days following, and the track fire on the N Line that forced us all to find a different way home. 

This June has been different, the mornings wet and cool and the days pleasingly warm.  We celebrated Hallie’s birthday with our friends in Astoria Park, dappled with shade and cooled by an East River breeze.  We ate, we made ice cream, and, as Hallie was passed from arms to loving arms, my friend Ben talked of how amazing our neighborhood is.  And he’s right.  I have never in my adult life felt such a sense of community.  I would have to go back to my childhood in the suburbs of Detroit where almost every house had a pack of kids, our dad’s all worked for the car companies, and our mothers drank their coffee and chatted while watching us play, to find anything even close.  And yet here it is, not in some idyllic small town, as I always supposed, but smack dab in the middle of New York City, where the park, diners, library and bakeries of any thriving small town have combined with a diversity, density and immigrant spirit to create a place where the streets dance with friends and acquaintances and where, in this busiest of cities, I always have time to talk with my neighbors.

The secret ingredient in all this is,  of course, the kids.  Heath lives to introduce himself to people, often complete strangers, almost always winning a smile, if not a full blown converstaion.  Hallie is more subtle, drawing people in with her beauty, her wave, and her pale blue eyes.  For Hallie seems to have a great capacity for joy, and it’s a gift she freely shares with others.  Any sadness or regret I felt at the time of her birth is certainly gone,  seemingly burned away in those first few days, and the gentle happiness of having her in our lives has brushed away any remaining ashes.

Last night Hallie had a fever,  which brought neither joy nor sleep to anyone.  Amy and I took turns holding her until, finally,  she fell asleep.   Restless and warm, she kicked her way through the night, but when morning broke, gray and foggy, her fever had subsided.  We arose, showered, dressed, and after a quick breakfast I kissed her goodbye, testing for the heat that was no longer there.  Then I was out the door and into the mist, feeling the moisture on my clean morning face.

 

 

Hallie’s Smile

31 Oct

A smile from Hallie is a rare thing.  With a stoicism that would have made Buster Keaton proud, Hallie remains solemnly non-committal.  Down Syndrome children are born with low muscle tone, which means they’re floppy.  Like a very cuddly rag doll, head and limbs go everywhere.  Because of this their physical development is slower than most children’s.  But Hallie’s been doing great.  She holds her head up, searching the horizon like a prairie dog, she struggles, she kicks, she grabs my nose, slaps my face, and yesterday she gave me a head butt worthy of a soccer hooligan.  This we call progress. 

And yet she rarely smiles.  

But within her limited range of expression she is hilarious!  With comic chops well beyond her years, she does more with a tilt of the head or a briefly raised eyebrow than anyone I know.  Chaplin, Lloyd and Keaton, were they alive, would certainly bow down to her.  Like the three wise men of old, they would gather together in the mists of some 1920’s Hollywood watering-hole and then pilgrimage across vast deserts, endless plains, and numerous decades to present-day Queens, where they would honor my infant daughter with precious gifts.  Chaplin would bring his physical grace, Lloyd his derring-do, and Keaton, whose lean wisp of a body is forever trying to make way against gale force winds, tumbling boulders, and collapsing buildings would bring the greatest gift of all: the quiet strength and comic ingenuity to overcome life’s greatest obstacles and to make us laugh while doing it.  In return she would bless them with, of course, a smile.

Because while they are rare, Hallie’s smiles do exist, as radiant as they are brief.  Initially, they might have been mistaken for a mere flicker of a facial muscle, but no more.  Her smile has found her eyes, and in unexpected moments her face will suddenly illuminate, igniting like a flash of summer lightning.  In that moment I know my daughter is a joyful being.

So, having accomplished their task, the three kings begin their journey home, each taking a final pratfall in hopes that their slapstick grace will win one more smile.  Chaplin, shameless ham that he is, lifts his hat and twitches his moustache as the others file out, but to no avail.  Sadly, he pulls the door closed with his cane, and then, as silently as they came, they are gone.  

Hallie, after pausing for a moment, lifts an eyebrow and cocks her head as if to say, “Can you believe those guys?”  And we laugh.  Only then does she look at us, wrinkle her pale blue eyes and smile for all she’s worth.