Tag Archives: Down Syndrome

Fireflies

12 Jul

Last night the fireflies appeared, three or four at a time, flashing in the waning light.  I called out and the kids came running.

“Wow! Dad, Dad, look!” Hallie, pointing, charges across the yard, only to lose the light.  Then, turning, pointing and shouting, she runs again.  A shadow in the dusk, Heath searches for a flash, moves toward it, gently scoops the small creature onto his hand and watches until, suddenly, it flies away.

This scrubby lawn and the small garden that surrounds it, shaded by our Magnolia tree and contained by the planks and walls of our neighbors’ yards, has grown, each year, a little more mine.  A patch of the world I try to make better, dreaming life into the thick clay soil.

The first year, planting late, I managed a bit of basil and garlic.  The following year, composting for the first time, everything came up cherry tomatoes.  Confused, but heartened by the fertility, last year I got an early start and planted a bit of everything.  Once again, cherry tomatoes.  So this year I stepped back.  Mowing and planting less, but watching more, I did my best to listen to whatever it is this place is trying to tell me.  By doing so, I’ve managed a small harvest of sugar snap peas, a lot of questionable garlic, 4 small tomato plants, something that may be leeks, and, up in the kitchen window, thyme, sage, and marjoram coming on strong.  My compost, long a dry, lifeless thing, is now dark and moist, writhing with worms.  And of course, in the evening, there are fireflies.

“I think it’s hurt,” Heath says, kneeling down toward the grass where, dimly, a light glows and fades. He lowers his arm and the small creature climbs on.

“What should we do?”  he asks.

I have no idea.

It’s a process.  With manure, compost, soil and leaves I work each year to build a better soil.  I don’t know what I’m doing.  Not really.  But I’m learning.  And in the past few days little purple flowers have blossomed about the yard as never before.  It seems wildflowers do prefer things a little bit wild.

Later, in the hammock, Hallie cuddles close.  “What’s that?” she asks, pointing to the lighted windows above.

“That’s the kitchen,” I say, as Amy’s shadow passes by.  “And that is you and your brother’s room.”

“What?”

“That’s where Heath is.”

She looks up at the window, and for a moment she’s still.  The hammock’s rocking slows.  Then, as the  fireflies dance, she takes my arm and wraps it around her body.

Lying in the darkness, I think about her joy, which is effortless.  I think about her brother’s tenderness, and how hard he works to keep it hidden.  And I think of the world that awaits them.

 

 

 

Big Magic

22 Sep

Central Park

Falling in love is small magic, a beginners sleight of hand.  With a little time and patience anyone can do it.  Marriage is something more:  A time-release miracle, performed in tandem, naked on a high-wire. Friends and relatives offer a toast as you climb the ladder, and then go their way, leaving the two of you to walk out alone, exposed, your lives in each others’ hands.  And while this is very brave, it’s not yet miraculous,  for alchemy takes time.

Saturday began early, crisp and cool, as we made our preparations for the Buddy Walk, the yearly Central Park gathering of the nicest families I know, and the day we join with friends to celebrate Hallie.  Heath hates this, of course.  He has to leave the house, spend hours outdoors, walk great distances, socialize in a loud communal atmosphere with limited technology, and all because of his little sister.  “Why God?!”  he cries, his hands aloft like a latter-day Tevye, “Why must there be so  much walking?  Why must there even be a Buddy Walk!?” And then he does his best to close out the world, burrowing beneath a sweatshirt, and desperately trying to find something, anything, to do on his tablet.  For Heath, we call this being a good sport.

As we move through the day, the clouds come and go.  Far more social than I, Amy is in constant motion.  She greets, she organizes, she chats.  I hang with Hallie as she gets her nails done (tasteful pink) and her hands painted (“Star,” she says, pointing solemnly to her left hand; “Heart,” she says, pointing to her right.).  Spending the day within a few feet of each other, we barely speak, and as the afternoon winds down, and our friends disperse with hugs and thanks, we make our way home to prepare for her brother Tim’s annual cook out.  More food, more wine, more friends.  A day of love, friendship, good food, and a little too much wine.

Sunday is our anniversary.  No gifts, no dinner, no expectations.  We can barely get off the couch.

Eighteen years ago I knew little of magic.  I just thought I was lucky.  I had met this sweet, funny, beautiful woman, for whom I felt a love stronger than any I’d ever known.  I offered my hand, she took it, and together we climbed the ladder and stepped out onto the wire.

The wonder of a good marriage is that there is no illusion.  It is very, very real.  And very pure, for it’s a miracle you create solely for yourselves, using only what you’ve learned from each other.  A mutual act of strength, humor, joy and grace, performed fully cognizant of how many times you’ve kept each other from falling.  And it’s so much fun.  To this day, nobody makes me laugh like she does.  And the magic just grows with each passing year.

I’ve always had trouble seeing myself.  There are moments of clarity, but most of the time I struggle.  Perceptive with others; I am, to myself, an amiable blur.  But for eighteen years Amy has been my mirror, unrelentingly showing me my best self.  A simple gift of incredible value.  And the biggest magic I know.

 

Amy

 

An Actress of Uncommon Stature

15 Nov

medea_diana_rigg_programme_lo_res

The performance begins without prelude.

Quietly at first, as we await our breakfast, Hallie catches sight of herself in the mirror and begins to chatter, rapidly but softly, with an intense staccato that slowly builds as, with virtuosic restraint, she works her way, rung by rung, up to the emotional highwire where, finally, she releases all in a swooning crescendo, her arm sweeping the sky as she falls away in a blood curdling “Noooooooooooo!”  A brief pause follows, and then she strains against the straps of her booster chair to check her reflection. Pleased with the effect, and the attention she has drawn, she drops back into her seat, spent from the culminating moments of her five-year old Medea.

But wait! Gathering her energies, she takes a breath and begins again. Initially terse, she launches into a finely wrought internal monologue, a soliloquy of intent.   Passionate, yet controlled, my daughter is rapidly developing into an actress of uncommon stature, her brilliance taking us all by surprise. Certainly, genetics has played a role, but she is now far beyond any gifts inherited from Amy and I, and her talent is all her own.  As a result, in some instinctive fashion, she has gone back, far beyond the modern canon, beyond even Shakespeare, to the primal works of Aeschylus, Sophocles, and Euripides. Not yet regal of bearing, she has, nonetheless, thrown down the gauntlet, challenging the great classical actresses of our time with her staggering combination of intensity, intimacy, and emotional commitment, all expressed with a banana-smeared face and only the rudiments of language.

For Hallie will speak in only the simplest of sentences.  Stubbornly refusing to use three words when one will do, she has expanded this approach into her own unique and rapidly developing oeuvre through which she proves, with each and every performance, that words are merely an adornment to great acting, a crutch for those who lack her artistic rigor and wide open heart.

Suddenly quiet, something shifts, and Hallie enters a different world. The intensity is still there, but it’s combined with a wry sense of amusement, a fatality which, in one so young, is both disturbing and mesmerizing. Could she possibly be…? Yes! She has moved on to Baby John, the youngest Jet in West Side Story! What am I witnessing here? Is she performing in back to back productions? Or has she interpolated the two plays, creating an extraordinary mash-up through which, with her loudly erratic personal rhythm and no sense of pitch whatsoever, she can deconstruct the American musical in a manner that challenges the very boundaries of theatrical convention?

The food arrives and Hallie settles in, glancing across to the mirror and smiling to herself as she begins to eat her scrambled eggs.  Fully aware of the ground she has broken and the ambitious heights she has yet to scale, she is an innovator to her toes, and I fear for the resistance she will meet. Luckily, though, our daughter is fearless, and cares nothing for the critics. Performing only for herself, she alone knows the perfection she pursues.

The rest of us are just lucky to catch a glimpse.

Hallie zoo

Following Hallie

12 May


Hallie’s walking now, and as I follow her through her days, I can’t help but wonder what’s going on in her head. 

For though her development is obvious, it is also, due to her Down Syndrome, both skewed, and mysterious.

You see, I’m not a book reader when it comes to my kids.  Some part of my soul quietly dug in its heels early on, and I’ve been resisting the experts ever since.   The downside of this is that I spend a lot of time learning things the hardest possible way.  The upside is that my instincts are my own.

So, of course, I could study up and nail down the developmental mileposts Hallie is likely to hit, and as far as her physical development goes, we’ve pretty much done that.  But the growth of her inner world  leads down a more tenuous path, and rather than burying my head in someone else’s map and fretting over every missed turn, I prefer to let my daughter lead.

Her ways are not direct.

After building herself up early on to a solid 15 word vocabulary, she more recently seemed to reach a dead end.  Undaunted, she did what any sensible explorer would do: she turned around and headed back the way she came.  And so we watched much of her early knowledge dissipate over the past year until we were back to “Da-da “, “Ma-ma”, “Up” and “Done.”  She even stopped saying Heath, for the longest time her favorite word.

But lately she seems to have found a new path, one that has taught her to walk, to sing, and to discover the word “Yeah.”  At this moment in time, this one syllable is her true medium.  Although her intonation is  limited, “Yeah” functions as more than just a sound she can repeat.  She uses it to answer questions.  She uses it for emphasis.  She uses it appropriately.  She uses it.  And for the first time, it feels like language.

I enjoy being lost, which is a gift.  For this is how we travel.  Up in the morning, diaper change and breakfast.  And then Hallie begins her journey.  I follow as she ambles along, her lurching gate growing in ease and strength with each passing day.  Despite her continued negotiations with gravity, she moves forward with joy and determination, smiling upon her world and brooking no obstruction.  She turns back only to make sure I’m still with her, and then, purpose renewed, she heads deeper into the beguiling labyrinth through which she is my only guide.

Hallie Easter 2011

 
 

Crossing 9th Street

23 Feb

The air was cold when I stepped outside, but the sun was up, slowly revealing the quiet morning streets. 

I’m not good in the dark.  My vision’s not great, and the farthest reach of my run, south of the park, is a little sketchy.  So the light is welcome, and it combines with my new fleece hat to make the calm, seventeen degree air tolerable.  Stepping over a mound of crusted snow into the dry street, I start the timer on my watch, and slowly begin to lope, giving my stiff calves a chance to warm up as I head toward the corner.

Hallie’s white cell count is low.  Her pediatrician had us wait a month.  We redid the test.  Still low.  Children with Down’s Syndrome have an increased incidence of leukemia.  She has none of the symptoms and her pediatrician says it is not an immediate concern.  We have an appointment with a hematologist in a couple weeks.  Steps are being taken.  There is no need to worry.  Nevertheless, her white cell count is low.

The first stretch of the run down Ditmars Boulevard is the most tedious.  Narrow sidewalks, few businesses, no trees.  That’s the reason I head this way.  I like to do the hard part first.  I’ve been trying to teach this to Heath, but he’ll have none of it.  He much prefers to kick his troubles down the road.  I understand this, I used to be the same way.  But it’s so much better to save the best for last.  This hard won wisdom does nothing more than bounce off the wall that is my son.  But I keep trying.  Repetition is my friend.  That’s what  I tell myself.

I was hoping for a red sunrise, that rare gift of cold winter dawns.  A couple times a year I’ll catch one of these; the sanguine light silhouetting the trees and houses above the park.  But today was not my day.  Turning away, I followed the icy path down toward the East River.

The path had been clear the night before, but this morning small drifts, a few inches  deep, covered the asphalt.  I bounced through them, hare-like, moving quickly to keep the snow out of my shoes.  Fully warmed, the running came easy now, and, despite my lack of exercise over the past weeks, I moved through the shadow of the bridge with a grace I had not earned. 

Hallie was up late last night, climbing repeatedly out of our bed, scooting into the living room, planting herself in front of the T.V. and complaining loudly for more Elmo.  I awoke to find her there, having worn her mother out, all quiet innocence as it approached midnight.  I scooped her up and took her into bed, where  I turned off the lights and laid her on my chest.  She was still for a moment, but then lifted her head and tried once again to climb down. 

“No,” I said, pulling her back, “You need to sleep.” 

She rested for a moment, and then rolled over into the crook of my arm.  I pulled her close and began, softly, to sing.  Slowly, she relaxed, rolling onto her side.  I rolled too, gently patting her bottom in time to the song.  We watched each other.  Her eyes began to flutter, then close, and soon she was asleep.

I crossed 9th street, stepped up onto the sidewalk and turned left, running south along the river.  A battered DEP ship was riding low as it made it’s way upstream, and I thought, “That would be a good life, sitting inside a warm cabin, drinking coffee on a cold winter morning.”  Beyond I could see Manhattan, it’s buildings just beginning to warm. 

When life overwhelms me, my focus narrows.  It’s imperceptible at first, but then it dawns on me, as I hunch my way through the day, that I am seeing little more than pavement, feet, and whatever is going on inside my head.  Running is the antidote.  The cold air in my face, the deep, chest-expanding breaths, the alertness needed to move quickly through a slippery world; all combine until suddenly I can see it all: sun, water, and sky; the whole gorgeous 360 degree panorama that is my world.

At some point during the night Amy moved Hallie to her crib.  Shortly thereafter she was replaced by her brother, who, god love him, seems to be nothing but elbows and knees and is about as easy to cuddle as a cinder block.  So when 5:30 rolled around, it was remarkably easy to get up, put on my running clothes, and step out into the cold.  

I know where I’m going when I run; the route is set.  Thirty minutes takes me through varied terrain and at the end of that time a journey has been made.  It is both well defined and wholly unpredictable.  I never regret it.  And it always brings me home.

 

 

Beautiful

4 Feb

When I wrote this a year and a half ago it seemed a little too personal to publish.  Now I can’t remember what I was afraid of.

My daughter is beautiful.  Don’t get me wrong, she has her squishy-faced moments.  But when I’m holding her to my chest and she pulls back to look up at me, her little chipmunk head slowly drifting back and forth as her pale blue eyes linger on mine, I would happily hold her forever.

When we learned Hallie had Down Syndrome my secret fear was that she would be ugly.  It seemed a shallow feeling, so I didn’t talk about it.  But it was there.  I remembered those sad old couples from my childhood who waited a little too long to have children and were rewarded with a son or daughter who seemed large, clumsy, and yes, ugly.

With our son Heath we had hit the jackpot.  Fair haired, blue-eyed and whip smart.  He got the best of both of us and from the moment he entered the world his beauty was apparent.  But as crazy as I am about him, I do not remember him possessing his sister’s haunting, open gaze. 

It’s easy to be a beautiful baby, and god knows that some combination of glasses, braces and acne lie down the road for both my children.  But it doesn’t really matter, now.  They’re my kids, and they’ve taught me how to see. 

I have always been short-tempered with those who want me to brace for the worst.  And yet, In the first days of Hallie’s life, I did it to myself.  The hurdles seemed endless and I braced for them all.  But three months later they are falling away.  There will be tough times, I know that.  But I’ve begun to relax, to roll instead of brace, to accept my daughter for exactly who she is with all her strengths and limitations.  And it’s so much easier than I ever expected.

Because she’s beautiful.

 

 

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.

 

 

A Change of Seasons

19 Sep

The first frost warnings of the season came to the outlying suburbs last night.  The resulting surge of cool autumn air blew through the city as if to clear away the greed and folly of this past week, and remind us all how little nature cares about our problems.  Robert MacFarlane points out in his wonderful book, The Wild Places, that the great forests that once blanketed North America waited Seventy  million years for the arrival of man.  I have little doubt after this week that those trees will also watch us go, and that our time here will be seen in their collective memory as a flicker of sad comedy, a slapstick spasm of existence that faded almost as quickly as it arrived, leaving a world to undo the damage and then quickly forget our meager shot at grace.

Which is to say, funnily enough, that I find solace in this change of season.  Amy and I will celebrate our twelfth anniversary this weekend and though I don’t think we intentionally planned our wedding for the autumnal equinox, it makes so much sense.  The wistfulness of summer’s end meeting the fresh hope of a new beginning is marriage in a nutshell.  And as my  week moved toward this time of change and celebration, it grew so rich in moments of beauty and hope that it stood in stark contast to the frantic scurryings on Wall Street just a few short miles away. I can’t remember the last time I laughed so much.

As I was turning off the light in Heath’s room last night he awoke and said “Dad, what are you doing? Is it Christmas tomorrow?”  Taken aback at this unexpected view into the my son’s heart, I was moved to learn that upon awaking from a dead sleep his first thought is of Christmas and that his greatest hope is that it’s tomorrow. 

Hallie, to the amazement of her therapists, burbles incessantly, emphatically making her points in a language all her own, and punctuating her few moments of silence with a solemn upraised fist.  Fight the power sister. 

And Amy, nursing a cold, a constantly hungry baby and a three year old boy who would happily crawl inside her skin if he could find a way, has graced me with some of the warmest, loveliest smiles I have ever seen.

New York is a crazy place.  Among it’s most widely accepted myths is that money bestows wisdom, happiness and importance. When you walk among the wealthy every day it’s a very easy belief to buy into.  But lately I’ve been thinking about Stonehenge, where, in the coming days, the sun will rise over Salisbury Plain, fall in perfect alignment with the ancient stones, and illuminate the heart of this solemn structure.  Such is the day I married Amy, and such are the moments we share with our children, when we look into their eyes, hold them close, and allow them to show us in so many ways that what we are doing is right and necessary and important.

They illuminate our lives.

 

 

Hurricane Season

10 Sep

The nights have been warm of late.  But as the darkness grows old and the stars fade, cool air that has spent the night crossing the Atlantic finally makes landfall at Rockaway and continues across Jamaica Bay, rustling down the streets of Queens, flowing around and through all the open windowed houses and apartments, gently stirring to life the sleeping families who have come here from all over the world to chase their dreams, until, finally, the early morning breeze rattles the blinds above my head and I open my eyes. 

And, sadly, the joy’s not there.  Like fresh peaches being slowly allowed to rot, I am incapable of enjoying summers last gifts. 

When Amy gets up, Heath cuddles against me, a physical closeness that’s just starting to become rare.  Hallie, peacefully sprawled across her bassinet wiggles and sighs, and I wish that I could sleep with her utter abandon. 

Like a sailor’s glass, my moods rise and fall with the changes in the air.  This weekend, as hurricanes filled the waters of the Atlantic and Hanna worked her way up the east coast, my emotional weather darkened and grew turbulent.  Exacerbated by lack of sleep, lack of exercise, caffeine addiction and a screaming need to have some time of my own, storms began to brew.   As always, my impulse is to grow quiet, hole up with a good book and ride it out.  But like any solitary endeavour, this was nigh on impossible with two small children and a wife who is more tired than I am.

And so I weathered the storm as best I could, reading and sleeping as much as possible while trying to be on best behaviour.  Doing the dishes, making food, feeding Hallie and answering Heath’s fifth iteration of “Why?” with as little impatience as possible.  Trying to accept the fact that I have, for the moment, lost hold of all the strands of my life.  As they blow frantically about, I do my best to grab them, but to no avail.  Until the wind dies down and fair weather returns, which it always does, I’ll just have to wait.

But Hallie is holding her head up more and more, although she still refuses to give me a smile.  Heath has started school and, despite daily stories of him hitting somebody or somebody hitting him, he seems to enjoy it.  Amy is as lovely as I’ve ever seen her, and for the most part, as patient.  And the storms are receding now.  The water is still rough, but no levees have been breached.  And tonight, I trust, the winds will once again make their immigrant journey across the sea to stir the dreams of my neighbors, to whisper the leaves of the trees and to to kiss my family with the fresh air of a receding darkness.