Behind These Hands Read online

  Want us to come in?

  What would you like us to do,

  Claire?”

  Tell me this is going to be alright.

  “Nothing, thanks.

  I’ll text you.”

  I hop out of the car fast

  but my feet drag like lead

  all the way to the door.

  They both stand up

  when I come in

  like in old-time movies

  when gentlemen stand

  for a lady entering a room.

  Mom lets some papers she’s holding

  slide to the floor

  as she stands

  and moves to embrace me.

  Dad joins the hug

  and then the tears

  and no one needs to say a word

  because the beast,

  the monster,

  Batten

  is loose in the room,

  in our family

  not once,

  but twice

  and a half.

  THE DETAILS

  We move to the couch in a cluster

  as if one of us would fall

  if we didn’t all hold on.

  The first thing I think,

  looking toward the door,

  is that Davy is going to burst in

  any minute

  until Mom says she arranged a play date

  for both of them.

  Dad blows his nose and collects himself

  enough to begin

  with more details than I can absorb,

  than I want to absorb,

  but it’s something he needs to do

  so I listen numbly.

  Davy and Trent both have juvenile Batten,

  the most common of a group of disorders called

  neuronal ceroid lipofuscinoses.

  I want to scream.

  It’s rare.

  Maybe two to four of every hundred thousand live births

  in the US are affected.

  It’s an autosomal recessive disorder.

  You get it only if you inherit

  two copies of the defective gene

  like Davy and Trent did,

  one from each parent.

  I don’t want to hear this.

  Dad looks at Mom as if he wants to die.

  He says he and she both carry one defective gene.

  That means

  each of their children faces a one-in-four chance

  of developing Batten

  or a one-in-two chance

  of inheriting just one copy of the gene,

  making them a carrier.

  I jump up and pace in front of him,

  out of control, sobbing.

  “Tell me, Dad, am I doomed, too?

  Is that why we are here right now?

  Are you going to tell me it’s three out of three?”

  He stands,

  grabs me into his arms,

  shaking me like a naughty child,

  nearly shouting back

  “NO NO NO!

  I should have told you

  right at the beginning.

  It usually strikes children

  between five and eight

  and Claire, of course you don’t have it

  but…”

  Mom jumps up and joins us again,

  speaking almost in a whisper.

  “Honey…you,”

  deep breath

  “you

  are

  a

  carrier.”

  CARRIER

  My head throbs,

  swirling inside

  as if my own mother

  had just hit me in the gut

  and stands watching, waiting for me

  to collapse.

  I shake loose from the cluster of three

  and stagger back to the couch.

  What does that mean,

  what she just said?

  Carrier?

  What does that mean?

  I put my head in my hands

  seriously feeling faint now,

  nauseous,

  miles away as if I had just stepped

  out

  of my own body.

  Is it relief that I’m experiencing

  or terror

  because of the blank hole this information

  has burned in my brain?

  “I…I don’t understand

  what it means

  being a carrier.”

  I force the words out

  trying to beat down the waves of nausea.

  Mom sits down next to me,

  takes both hands in hers,

  and looks squarely into my eyes.

  “It simply means, Claire,

  that you can pass the mutated gene

  on to your own children

  one day,

  but it’s not something

  you need to think about

  right now.

  Certainly not

  right now.”

  Good.

  I won’t.

  I can’t.

  I don’t want to

  think about it

  ever.

  THE QUESTIONS

  They ask me if I have any other questions

  before Dad leaves to pick up my brothers,

  my desperately ill,

  terminally ill brothers.

  I shake my head.

  “I need to be alone.”

  Once inside my room I lock the door and pace

  until I collapse onto my bed, bury my face

  in the pillow, and let the sobs come in muffled waves.

  Anger

  How could this happen to our family,

  to my precious little brothers?

  How can I live a normal life

  and watch them die?

  Guilt

  Why did I win the luck of the draw?

  Why do I get to live and they don’t?

  Where was my concern for Trent

  in the conversation just now?

  Fear

  How will I plan for my own family

  someday

  with this ghost,

  this beast

  in my genes?

  Frustration

  Can’t somebody

  DO SOMETHING

  to stop this from happening?

  THE UNDERSTUDIES

  Mom taps on my door

  to say dinner is ready

  but she would understand

  if I want to eat in my room

  alone

  just this once.

  It would be easy

  just this once,

  like going way around the sighting

  of a grizzly bear today

  and meeting him for breakfast tomorrow.

  “No, just let me splash some water on my face,”

  I say,

  “so the boys don’t…

  I mean, so I, you know,

  look presentable.”

  “Thanks, honey.”

  She leaves before the courage

  in the room evaporates.

  It’s as if they’ve been practicing this role

  like understudies for years

  and now

  it’s time for the big performance

  and they are in perfect form.

  Mom asks Davy how his play date was,

  her voice as bright and chirpy

  as breakfast on Christmas morning.

  Trent jumps in to tell Davy,

  more than the rest of us,

  how his friend, Sam,

  thinks he knows how to play flag football

  but really

  he doesn’t because every time he gets the ball

  he fumbles.

  As if on cue, right after the blessing, Dad says,

  “Okay boys, picture the piano, right?”

  They zoom in on Dad,

  an eye-sparkling audience

  when he’s about to tell a joke,

  l
ike he’s about to pull a rabbit out of a hat.

  “Listen up now, there might be a reward

  for the one who gets this. Ready?”

  Davy pipes up, “How about extra dessert?”

  Dad feigns shock, then deep thought

  and an evil smile, “Veel see about dat.”

  He continues in full accent,

  “Vi eez de peeahno zo ‘ard to opeeen?”

  Mom tells the boys to keep eating

  while they think

  and my muddled brain tries to think

  while I push food around the plate,

  knowing for sure I can’t eat.

  I doubt I would come up with an answer today,

  even though I’ve heard it before.

  I stare at Trent’s curly blonde hair

  and beautiful blue eyes,

  how they light up when he’s having fun,

  like right now.

  How long will it be

  before that light goes out?

  I look across the table at Davy,

  at the constant smile he wears on his face.

  Will that smile follow him

  all the way to the end?

  Davy and Trent toss answers around the table:

  Because it’s locked.

  Because it’s stuck.

  Because it’s broken.

  Because the player is too dumb.

  We all smile at the last one

  and when the boys give up,

  we all groan at the answer,

  “because the keys are on the inside.”

  “Okay, okay, the cat got that one

  but you should be able to get this next one

  based on what you just learned.

  Listen up, now.

  Where did the music teacher leave his keys?”

  Dead silence, and some chewing and slurping

  then Trent blurts out, “On the piano!”

  Mom and Dad keep up the act

  while I fight back tears.

  He’s so darned bright.

  WITH JUAN’S HELP

  It’s after midnight

  when I fall into bed,

  sure that I will never again

  simply fall asleep.

  I remember the promise to text Juan.

  I decide it’s too late

  when I see an 11:45 message from him.

  R u ok?

  I start

  and stop

  and start again.

  Idk.

  Me half…Trent all.

  Why why why?

  Can’t live with this.

  Can’t.

  CAN’T!!

  I’m sobbing again

  ready to throw the phone

  and scream into the pillow.

  Juan responds.

  Sooooo bummed.

  So damn bummed.

  I could come over.

  Finally thinking of someone but myself…

  NO TY.

  Parents in bed.

  C u tomorrow.

  And just as I turn out the light,

  Juan’s words:

  U can.

  U will.

  I’ll help.

  Better than a sleeping pill.

  THE STALKER

  For once I’m glad it’s Tuesday

  and even more relieved when

  Carlos and Tara carry on

  with puppy-love banter

  ad nauseam.

  If Juan tipped them off to keep it light

  before I got in,

  their script is priceless.

  Juan glances over the seat

  with a look almost painfully

  compassionate,

  but I return it with gratitude…

  no, something way beyond gratitude

  and a weak but thankful smile.

  Our walk to the lockers,

  the time usually spent giggling

  over the car conversation,

  turns awkward.

  “Juan, about last night…”

  “Honest, Claire, we don’t have to talk about it yet if…”

  “No, I mean, your offer to help…”

  “Well, sure, whatever I can do, I mean…”

  “Thanks. Just…thanks.”

  He sees the tears coming

  and oddly

  quickens his pace

  while I don’t cry

  and oddly

  wonder why

  I’m disappointed he didn’t hug me.

  I feel the beast stalking me

  like a new predator

  lurking around familiar territory—

  my turf,

  my solid ground,

  causing tiny seismic tremors

  that threaten to open the earth

  and devour me

  and all that matters to me.

  QUIET DAY

  I slog through the day

  like a robot

  relying on some kind of pre-programming

  to deliver me from class to class—

  feet moving without navigating,

  eyes looking without seeing,

  brain receiving without processing.

  I don’t question the wide berth

  I’m getting from teachers and friends

  or the fact that Juan and Mia

  appear by my side

  like angels shadowing me

  periodically

  throughout the day.

  Juan must have put out an all-points bulletin:

  She’s fragile as glass today because…

  It got me through the day

  but packing up after the last bell,

  I’m feeling isolated

  and exhausted.

  As if they picked up my signal,

  Juan and Mia swoop down on me

  from both sides,

  each grabbing an arm.

  “C’mon, we heard Schmoozies calling,

  and we decided we would let you tag along,”

  Mia says, working hard to keep it light

  and playful.

  I start to resist when Juan puts his hand up

  like a good traffic cop

  and offers me his arm

  like a good escort

  and beams a broad smile

  like the good friend he is.

  I let him lead me out the door

  where the sharp blast of November wind

  feels good to my dulled senses

  on the two-block walk

  to everybody’s favorite hangout,

  but what feels even better

  is the way Juan knows

  when to let me be

  quiet.

  SCHMOOZIES

  The near capacity after-school noise—

  loud chatter,

  dish clatter and bang,

  chair scrapes—

  jarring at first

  and then suddenly welcome,

  like waking up out of a disturbing dream,

  relieved to know

  you are alive.

  For the first time all day

  I actually form a thought:

  yes, I am alive

  and then

  should I be?

  We head for the table in the back,

  our usual spot, spilling over with

  Tara and Carlos,

  Mia and her off-again, on-again friend Kyle,

  Juan and me.

  Finally I feel like talking

  as I look around the table at my friends.

  “If I didn’t know better

  I’d say someone has called a meeting, guys.”

  It breaks the tension and Mia jumps in.

  “We just want you to know we’re here for ya, Claire,

  whatever we can do to help…”

  They nod, smile, and murmur in agreement.

  I’m thankful the walk over

  chased away potential tears.

  There’s so much that I want to say, like

  how much I don’t kno
w

  about the disease,

  and

  how I don’t deserve to live

  while my little brothers are going to die,

  and

  how I feel so scared,

  and

  how the future—

  theirs

  and mine—

  is so shrouded in a black cloud

  of uncertainty,

  but

  for now I welcome the warmth

  of friendship

  on a cold November day.

  JUST A BAD DREAM

  It’s almost midnight.

  Today’s homework sits

  unfinished

  on my desk.

  Scattered, disorganized papers

  glare at me, dare me

  to get on with the program,

  the business of life.

  The ticking clock on my wall

  a noisy gong, reminding me

  that time has a new meaning

  in our family.

  The quiet house

  whispers a lie that all is well

  at the end of the day.

  My restless, wide-awake eyes

  dart from the half-finished narrative,

  “The Life and Times of the Talking Piano,”

  burdened, weighed down by eraser marks,

  to the desk calendar,