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To Play in the Rain

26 Jul

This gift will last forever, This gift will never let you down… 

  –-Glen Hansard

Last night, at bedtime, I could feel the pull of the night air.  I stepped out onto the porch and looked out across the sky. Pale blue with hints of pink, and thin gentle clouds that rose into small,  fairy-tale mountains as I turned to the north.  A breeze on the warm side of cool brushed past the leaves as Hallie followed me out. “Wow,” she said, looking up at the sky, her hair dancing across her face.

Crawling out of the water that morning, rivulets coursing down my body, I rolled onto the catch basin, too tired to lift myself completely out of the pool.  Slowly standing,  breathing hard as drops of water hit the cement, I slowly made my way across the pavement and up the stairs to my t-shirt and towel, every movement intensely felt in my tired muscles, happy now only to walk, after swimming so far.  Is this, perhaps, why we left the oceans behind us? The sheer pleasure of moving in a different way?

The summer’s been lean.  After a couple years of abundant money and too little time, I’ve had to learn again how to live with the opposite.  And for the first time in ages I feel as if I’m having a summer.  My life is made of wind and water, heat and rain.  The sun rises and sets before my eyes, and as the days grow shorter, I am happy to sit on the porch with my little girl and say wow to the sky.

Swimming, biking, and eating ice cream; childhood pleasures that have always cheered me.  But this summer I long to add another.

I want to play in the rain.

I want to dance in puddles with my daughter, chase kayaking leaves with my son, and laugh with my wife as we both get soaked to the skin.  It’s been a while, and I’m sure I’ll look crazy.  But that’s okay.  Embarrassment holds little sway in my life these days, it’s just another enemy of joy.  And joy is what I’m after.  It is, of course, all around me:  in the motion of my body and in the air that I breathe,  in the clouds in the sky and the laugh of a friend, in the attention of my son, the touch of my wife,  and always, always, always in the eyes of my daughter, where the world never fails to inspire, befriend and renew; and where love abides for all she beholds.

 

Listening to the Rain

20 May

We sat on the back steps and watched the lightning play across the sky.  Tim was with us for a time, but then he went inside, leaving Heath and I alone, counting the seconds between lightning and thunder.

Heath has always  feared storms, demanding that blinds be closed at the lightning’s first flash, and burying himself beneath pillows when the thunder begins to roll.  But tonight I had a hunch.

“Heath, do you want to come watch the storm with us? ”

“No!” came the reply, muffled beneath the sofa cushions.

I let it go, stepping out into the darkness, only to return a few minutes later.

“Are you sure you don’t want to come outside?  It’s perfectly safe.  The storm is still miles away and we’ll come inside if it gets too close.”

“Really?” he asked doubtfully, peeking from beneath his shelter.

“Oh, yeah” his Uncle Tim replied. “I’m gonna come inside before I get rained on.”

And suddenly, surprisingly, he was at my side, a boy-sized bundle of curiousity and trust.  He stayed close as we walked out onto the back deck.

As a child, I would snuggle down as storms blew in off Lake Michigan and the freshwater wind whipped the sheer cotton curtains over my little double bed.  The thunder would crack, impossibly loud, and my heart would jump as I clenched my eyes shut; relaxing again only as I listened to the waves roaring in the distance, imagining them creeping across the sand, and up to our very door. 

A tornado once dropped a car into my grandparents’ front yard, it’s panicked driver bolting through their living room and into their basement, passing on the way my grandfather, calmly watching his beloved Detroit Tigers.  

And I remember the Fourth of July when lightning mingled with the fireworks.  Later that night the sirens sounded and we made our way to the basement with our pillows, blankets and portable radio, waiting sleepily until the storms had passed.  Mom was up early the next morning to visit dad in the hospital.  He was coming home in a few days.

We watched the dark clouds move in from the southwest.  I had told Heath that that if he counted the time between the lightning and thunder, he’d know how far off the storm was.  He loved this, and clung to the knowledge fervently, insisting that I begin to count out loud whenever the lightning crackled, and then nodding sagely when he heard the thunder.

“The center of the storm is four miles away.” he’d say.

“That’s right,” I said. And then we’d wait to start again.

My mom didn’t find my dad that morning.  She walked into an empty room.  He had died during the night.  While we were huddled in the basement, listening to the radio, and waiting for the world to calm, he had pulled aside his covers, gently stood up, and made his way to the window.  

“The center of the storm is nine miles away!

“Your right. It’s moving away from us now.”

“Really?”

“Yeah, the numbers are getting bigger, that means the storm is getting further away.”

I see him so clearly sometimes.

“Is there going to be any more thunder?”

“Just rumbles.  Nothing to worry about.”

Standing by that window, seeing his reflection in the darkness, and then looking beyond it. 

“You were so brave, Heath.”

“Yeah.”

Watching the storm, missing his family, and listening to the rain.

 

 

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.

 

 

Appreciating Heath

4 Feb

Heath is leaving his school today.  His teacher has made cupcakes, his classmates have written letters and drawn him pictures.  The adults are crying, the kids are tanked on sugar, and my wife says it’s about the sweetest thing she’s ever seen.

I would never have predicted this.  Heath’s time at P.S. 122 has been bumpy, to say the least.  Last year was rough, and this year was worse.  He hated school, refused to go, and threw tantrums when he finally did.  He disrupted class several times a day, running from the room, screaming in the hallways, and at various times kicked or hit every teacher or principal who tried to calm him down.  He was not a happy kid.

On particularly rough days we would sometimes walk around the corner to his old pre-school and visit Miss Fischetto, whom he adored.  Once, while he was inside getting a drink of water, I told her what was going on.  She reminded me that it had taken Heath a few days to settle in with her as well.

“You know,” she said, “you have to…” .  And then she stopped, looking for the right word.  “You have to learn to appreciate Heath.” 

She was absolutely right, and I was moved by her insight, but how do you make that happen?

At a loss, we had Heath evaluated.  He was diagnosed with Asperger’s Syndrome.  And with that diagnosis, a small series of miracles began to occur.

The long suffering staff at Heath’s school seemed to redouble the patience and kindness they had shown our son, working with us on strategies to help him through his day.  

The school psychologist, Mrs. Reyes,  immediately made us aware of NEST, a new program administered by NYU and the New York City schools that was having great success with kids like Heath.  She let us know that it was a long shot, but they had an opening, and she wanted to submit Heath.  We agreed, embarking on what I expected to be several trying weeks of observations, interviews, meetings, and paperwork.  In reality, they were a balm, as person after person brought knowledge, kindness and laughter to the care of our son.

In the end, he was accepted. 

His two new teachers came to our house this week to meet him.  His new classmates have written him letters telling him how much they’re looking forward to seeing him.  It’s the way the world should be.

When things were at their worst, Heath’s principal told me that she was trying not to suspend him, but at some point her hands would be tied.  When I said, “Maybe that’s what he needs”, she said, “No… we don’t want to do that.  He’s just a little boy.”

So today Heath says good-bye to a school, and to an amazing group of people, who, under very trying circumstances,  never forgot that he is just a little boy.  And who never stopped appreciating him.

And for that we will always appreciate them.

 

 

The New Normal

23 Dec

It’s been an odd week. 

Stumbling into Monday morning, I attempted to prop myself up with what turned out to be the highly volatile combination of yerba mate and Grooveshark.  As a result, I spent much of the next two days ecstatic over the recent recordings of Glen Campbell. 

Heath, who, for those of you playing along at home, has now been diagnosed with Asperger’s syndrome (begging the question, does one family really need to be this special?  Can we not spread it around a bit?), has been charming the pants off the various and sundry psychologists, counselors, and therapists who’ve been mentally poking and prodding him over the last several weeks.  Which is saying something for a school-hating six-year-old famous for both the volume and frequency of his meltdowns, and who, when asked by his teacher to write down his homework, recently told her to “stir it with her nose.” 

But with his diagnosis has come an unexpected outpouring of support, especially from his school.  And as with Hallie’s birth, I am reminded that we are not alone, and that any walls between myself and the larger community are largely self-built. 

And speaking of Hallie, she took her first steps!  Two wobbly lunging steps from her therapist’s arms to mine, grinning from ear to ear the whole time.  A year and a half after most children walk, and a good six months after those with Down syndrome, she is, as always, happily doing things in her own time, and redefining “normal” for us all.  I believe she see’s this as her job. 

As for Amy, we don’t see much of each other these days.  Any time we have is filtered through the needs of these two raucous beings who have hijacked our lives.  But she is good at Christmas, and preparations are afoot.  Hopefully, sometime soon, we’ll find some time alone.  That would be the best present of all.

So deck the hall’s, roast some chestnuts, jingle your bells, and hark those herald angels.  

And if you get a chance, check out the most recent Glen Campbell album.  It is awesome!

 

 

Chrysalis

3 Jun

Caterpillars are becoming butterflies.  Five little cocoons hang from the side of a mesh cage in Heath’s bedroom, and we are counting the days until they emerge.

Arriving in the mail in a small plastic cup loaded with enough food to sustain this transformation, the five larvae grew rapidly over the past week before attaching themselves to the lid, assuming the much-anticipated J shape, and, in a matter of hours, encasing themselves in a dense brown shell of their own making.  Having moved them to the larger butterfly cage, we wait. 

Patience is not a word that leaps to mind when I think of my son.  But his imagination, so tightly coiled around all things celestial for the past year,  has begun to expand, and as the school year ends and he moves beyond a teacher who never appreciated all that makes him special, he has begun to relax.  With the addition of a new pair of glasses and a daily squirt of Nasonex, the world is regaining its clarity and my little boy is finding the sweetness and vulnerability he has buried beneath anger for much of the year. 

And his sister senses this. 

Hallie Jake.  We loved the idea of a little girl with such a rakish name, redolent of wise-cracking 1930’s aviatrixes, Amelia Earhart & Kate Hepburn rolled into one.  The kind of woman who could hold her whiskey, throw a good punch, and stand toe to toe with any man.  A woman who was smart, independent and, above all, strong.  Which I have no doubt Hallie will be.  For she is fast becoming a spunky, resilient little girl whose buoyant spirit has become a mainstay in all our lives. 

My own feelings for her are, at times, so fierce as to be bewildering.  

I had heard somewhere that in times past Downs children, considered imbeciles, were often abandoned to orphanages where their heads were shaved and they languished under the minimal care such institutions offered.  What haunted me about this story was the lack of love, horrible for any child, but somehow more so for a child who has a greater struggle to understand.  They must have felt unloveable, as if they deserved their loneliness. 

So in those first confusing hours, when I had no idea what else to do,  I vowed that Hallie would feel loved.  And to this day, when I hold her close as she’s falling asleep, I whisper in her ear, so she’ll never forget, “You are much loved, Hallie Jake.  You are much loved.”  This simple invocation, and the feelings it inspires, has lead to places in my soul I never knew existed.  It’s as if, after living my entire life in a small apartment, I’ve opened a door to discover a palace.

And now, days away from her second birthday, the love she’s received has begun to blossom.  I can see it in her eyes, especially when she looks at Heath: her hero, her brother, and her best friend.

As we move into the early heat of summer, Heath is keeping an eye on his five little charges, waiting for them to begin their gentle struggle toward a new life.  He’s not going to want to let them go.  I can see it coming.  And although I remind him daily that all creatures long to be free and that if he keeps them too long, they will die, I know he doesn’t believes me. 

But, we’ll see how it goes.  That’s a battle for another day. 

In the meantime we await the beating of newfound wings.

 

 

Gravity

16 Apr

“A black hole is, quite simply, gravity gone mad!”

So Heath frequently intones in his stately British accent.  Our tow-headed purveyor of galactic doom, obsessed with all manner of star death, has memorized a BBC video,  and this phrase has become something of a mantra for him, and, secretly, for me as well. 

For you see, I am now forty seven years old, and it has been eight years since that glorious time when I both ran a marathon and appeared onstage in a bathing suit, feeling, as a result, young and lithe.  Since that time I’ve learned a few things about gravity myself, and they are not very pretty. 

Without my shirt I’m beginning to resemble those burly old guys who trot their bellies into the icy waters off Coney Island every New Years Day to frolic about like over-fed otters.  When it comes to my midsection, gravity has, indeed, gone mad. 

And while this cruelest of forces is slowly dragging my pendulous bits earthward, it also continues to keep Hallie’s diapered behind planted firmly on the ground.  Approaching the age of two, her standing is slowly improving, but walking is still but a dream.   Of course, this bothers her not a bit.  She knows little of gravity and cares even less.  In an unwitting reenactment of Newton’s watershed moment, a dustbuster recently fell on her head.  Far from bringing enlightenment, this merely riled her and, after a brief cry and a little soothing, she continued on her way, scooting across the floor in search of objects to scatter, raging at the universe in a language all her own. 

Amy, of course, is affected by gravity not all, being a creature of light, air, and occasionally fire.  The sun to our planets, she warms us when we are cold and lights our way when we are lost.  I see it most with Heath, who struggles with an outsize temper, disowns us frequently, and yet yearns to be near her constantly.  She never forgets this, even under the most trying circumstances, and I, with a temper of my own,  learn by her example daily.

I often wonder how I’d handle fame and fortune.  So many men crumble under the weight of what seems, at my great distance from either, an amazing gift.  I know my weaknesses, and I’m sure I’d stumble a bit, but I doubt I’d fall.  Because somehow Amy, Heath, Hallie and I have managed to create a universe that spins at just the right speed to keep the stars glittering, the black holes at bay, and my feet on the ground.  

So let the testing begin.  I am more than ready.

 

 

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.

 

 

The Ascent

29 Jan

It’s bitter cold here in New York.  Seventeen degrees  and the wind howling down out of the north to shatter against the city’s land mass,  sending shards of atmosphere screaming along the East River and up into Queens where they relentlessly sliced into Heath and I as we made our way to school this morning.

P.S. 122, and it’s eastern approach along Ditmars Avenue,  most certainly rank with Everest and K2 as some the most treacherous terrain on earth.  Seductively flat and populous during warmer weather, amateurs are frequently lulled into a false sense of security on this traverse.  But when the weather turns, it can become deadly.  Heath and I passed several parents who had given up entirely, sitting in the middle of the sidewalk staring blankly into the distance as a thin layer of ice formed over their face and their children tried to prod them into life.  Poor bastards, there was nothing I could do.  To help them would have been to endanger my own mission, and that was unthinkable, the prospect of return far more daunting than the agony ahead.  For if Amy were to spend another day with Heath at home, her head would surely explode.  And after a week of stomach flu in our house, that’s one mess I just couldn’t face.

It’s the flu that kept Heath home these past two days.  Briefly ill, he rapidly returned to peak form, and though he is a smart, funny and completely adorable child, he is also, quite frequently, whiny, demanding and incredibly high maintenance.  As Amy and Hallie were recovering from the flu, and I was fighting it off, the last thing anyone wanted was to print a coloring page of every celestial body in the known Universe, one at a time, at an interval of roughly one every thirty-five seconds, from dawn until dusk, which is Heath’s current idea of heaven.  Nor did we want to read Carl Sagan’s “Cosmos” from cover to cover.  And we certainly did not want to spend the day either arguing or explaining about literally everything.  We wanted to rest.  We wanted Heath to go to school.

So we began our preparations before dawn.  Neither one of us spoke much, lost in our own thoughts, knowing what we were up against.  Shortly after the sun had cleared the horizon we kissed Amy and Hallie for luck and began our ascent.  Being purists, we used neither ropes nor oxygen.  However we did hold hands, especially when crossing streets.  We found a rhythm that worked for us and, with slow but steady progress,  we found ourselves, shortly after 8:00 am,  just below the summit.  We stood there quietly, as men will, savouring our achievement.  After a moment I simply handed Heath his lunch box, gave him a kiss and wished him a fun day.  And then, sensing it was the right thing to do, I let him travel the rest of the way on his own, up the steps and into the school.

My flush cheeked boy, starting another day.