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,
Behind These Hands Page 7
