Behind These Hands
Page 19
it’s that I cannot stop thinking
about you.”
“Me, too. Well, I mean,
oh, you know what I mean,
about you,
I mean.
Right?”
“Yeah, I really do,
and I
love
it.”
“Good night, Claire.”
“Good night, Juan.”
STREAMING LIFE
Calm, rested, recovered from strep.
That’s how I feel lazing in bed
this Saturday morning
going over all the amazing events
of the previous day.
Spring is brewing outside my window.
A shaft of sunlight catching dust particles
looks like a conveyer belt
streaming life—
yes, life—
into my room.
I get up
and look in the mirror,
sure that I can see the kiss
smiling back at me
and
I study my hands,
hold them up to the mirror
and picture them playing benefit concerts
for my brothers.
For the first time
in a long time
I speak to these hands.
Not even Juan knows this yet
but he said he would help
and I know he will. I’ll use
the scholarship money,
somehow,
as seed money for
a benefit concert tour
to raise more money,
lots of it,
for research
to fight beastly
Batten.
Just as the kiss rests on my lips
so does the music in my soul
rest
in my
heart
behind these hands.
TIME TO REFLECT
A quiet cup of tea with Mom
is long overdue.
It seems to give her a lift
until I ask about the possibility
of meeting with the Swoon Hunk
to resolve the secrecy issue
once and for all.
“You need to take that up with your father
yourself. I don’t have the energy.”
I vow not to react
and strike out in a different direction.
Without mentioning a word about
the plans for a celebration,
I just tell her more about my new friend,
Mrs. Shepherd.
She smiles.
The sun, the gorgeous Spring sun
floods our kitchen
encouraging each of us to open up
like new flowers.
I let her vent.
Working part time might be better
than a leave of absence.
Dad might make it work at school,
but things are still touchy.
Davy’s seizures and Trent’s sleep issues
seem to be responding to new meds,
but it’s one day at a time.
I sit at the counter long after she leaves
to get groceries, basking in the sunny room
and the time
just to reflect.
I think about how the icy finger
of death invaded our house,
our family,
my brothers,
just six months ago;
and how it threatened to steal
the oxygen from all of us
for a while;
and how it still lurks,
will always lurk,
but it isn’t going to win
without a fight
to the end.
We will celebrate the life
OUT
of Batten Disease.
DREAMING NEW DREAMS
Davy and Trent are in a festive mood,
parading around the kitchen
and singing at the top of their lungs.
Mom and Dad just told them that their
dream wishes have come true.
Davy will be going to visit
the “Galloping Ghost” in Chicago,
the largest arcade in the US
where he can play video games
to his heart’s content,
and Trent will be going to
a Dallas Cowboys game
to meet his idol, Tony Romo.
What they don’t know
is that Mom and Dad will pick me up
at the end of the summer music camp
and we will all go together
to watch each wish
come true.
grieve and then dream new dreams.
Was it grief or guilt that stirred
such reactions to my winning
the contest, going to the summer program,
accepting the scholarship?
Will I ever sort it out?
And now,
is it dreaming new dreams
that frees me up to
deal with it?
Who knows what can happen
when you set your mind
and your heart
and your hands
to work
dealing with
life.
DOUBLE DOSE
My mind wanders during classes.
Maybe Spring fever.
Definitely not music like it once was.
Probably related to the Make-a-Wish news.
I wonder
how my parents framed it
when they told my brothers
their wishes have come true.
I wonder
if my brothers wonder
why they are so lucky.
I wonder if they’ll ask me
if having seizures
makes dreams come true.
I decide to bring it up with Dad
one more time
after an early supper
and soon wish
I hadn’t.
Civil, controlled, but final,
he says,
“They are not ever to know.
Don’t bring it up to me again.”
I nod in reluctant agreement,
hold my tongue
and leave the room.
I entice Davy and Trent
away from the Nintendo games,
grab the soccer ball
and storm out the door
headed for the park.
I’m still fuming when we get there
and can scarcely believe it
when the two football jerks
already have the field.
They see us
and recognize us
and start laughing
and shouting obscenities as they toss the football.
I gather Davy and Trent close to me.
“Okay guys, looks like the field is taken.
Listen carefully. When I say ‘run’
grab my hands and we are going to run
instead of playing ball this evening.”
I wait until I’m sure I have
the jerky jocks’ attention,
give them a double dose
of the finger
and shout ‘run.’
I haven’t felt so good in months!
GETTING THE SHOW ON THE ROAD
The six of us slide into our Schmoozies booth.
It’s a perfect Springtime day,
the kind that usually lures you outside
but
on behalf of Davy and Trent,
my friends are here with me
in a stuffy restaurant,
eager to put the finishing touches
on a celebration of life.
Juan hands me the “duo-able” duet
he’s worked up for the
benefit concert,
basically just the opening part
of the celebration
.
“Piece of cake, right Claire?”
“Looks that way,” I say with a smile after a quick glance.
I flash back on the grueling days of practice
before the contest,
before the awards recital,
our horrible misunderstandings,
both of my musical flubs.
Now everything about music
and about this moment
feels right,
balanced,
light as a feather and
steady as a rock.
Mia has visited the care facility,
worked out the details with the program director,
explained to Mrs. Shepherd that
she can expect a few visitors at her place
sometime in May
and oh yes,
she might want to take out those Pete Seeger records
and practice singing along.
“I’m working on a poem, a tribute to
Mrs. Shepherd, who gave us this idea,
and to her children,
and of course,
to Davy and Trent.
I’m jazzed, too.”
She smiles big and nudges Juan.
Kyle has brushed up on his guitar
and is busy learning some Pete Seeger songs.
Tara has designed flyers
and is working the cheerleaders up to a frenzy.
Carlos says the wrestling club will donate refreshments
and maybe even put on a little demonstration.
“Whoot, whoot! I’ll bet those old ladies
will love that,” Kyle says.
After we all recover from a good laugh,
I try to thank them without breaking down.
“And there’s just one more thing.”
I look at Juan and then Mia.
“Will you two come with me, to help me
lay it all out to my parents? I think it is just
the right time for them to hear
some good news, and I want you both
to be part of that.”
“Yes!” from Mia
with tears welling in her eyes.
Two thumbs up from Juan
and the smile.
FRIDAY EVENING
I ask Mom if Juan and Mia
can come over Friday evening
to work on a group project
for school.
She wears a new tired look
since going back to school part time,
an indication that things are still
too unsettled with Dad’s job
for her to feel she can quit.
“Of course. They are both
part of the family, aren’t they?”
My mom’s a champ in my book
and Dad, well, we won’t ever see eye-to-eye,
but I hope what we are going to tell them
will pierce the darkness
in their lives
like it has
in mine.
THE FIRST PARTY
I have that pre-concert feeling
like I did the night I went to Juan’s house
for our “world premiere” party.
Only this is better,
because it’s not all about me
or my music
and there is no sense
of competition,
but rather
the feeling that something big
and good
is about to happen.
Juan, Mia and I hang out in my room
until the boys go to bed,
and I breathe a sigh of relief when bedtime
goes off without a hitch—
seizures, tantrums, or otherwise.
When the house seems quiet
we do knuckles all around
and head downstairs.
Juan, without our having rehearsed
or discussed it,
takes the lead.
“Mr. and Mrs. Fairchild, do you mind
if we interrupt?”
Mom looks up from grading papers, startled.
Dad puts down his book, tentative, curious.
Juan tells my parents a lot more
about what I’ve been up to
than I would have
but it’s okay
because he’s doing a much better job
than I could
except for the fact that it’s embarrassing.
I stay silent, trying to read their faces:
stunned,
amazed,
excited,
and their thoughts:
Really?
Claire?
Without saying a word?
When?
How?
Mia jumps in,
literally babbling
about Mrs. Shepherd
and the need to celebrate
her children,
their lives,
our lives,
Davy and Trent,
Now.
I tell them we are just waiting
to set the date for the celebration
sometime in May
but since it involves Davy and Trent
we wanted to check with them first.
Mom is crying softly now
and Dad clears his throat several times
trying to speak.
I remember the night the three of us
huddled in this room engulfed in tears.
When he finds his voice, Dad says, “Claire,
I owe you another huge apology. I was
reluctant to have you enter that contest
because I, well, I wanted to protect my little girl
from being hurt,
in case she didn’t win.
I see now that someone with all this courage
didn’t need my protection.”
“No apologies, Dad. We’re moving forward, right?”
He’s about to answer when the doorbell rings.
Mia and Juan exchange glances.
Mom glances at her watch and gets up
with a worried look on her face again.
I think I hear guitar music before she opens
the door.
She barely has time to move aside
before Kyle leads the way in
followed by Tara and Carlos,
singing “This Land is Your Land”
at the top of their lungs.
Now I’m crying because
Juan and Mia
conveniently neglected
to tell me about this part
of the evening.
We all join in.
Out of the corner of my eye
I see Davy and Trent sitting at the top
of the stairs,
smiling and clapping.
Mom brings them down
and we finish the song.
“Are we having a party?”
Davy says.
“Yeah,” Trent says, rubbing his eyes,
“How come you didn’t invite us?”
All eyes fall on me.
“This is just a preview, guys,
the first of many
and you will be invited
to every single one of them.
I promise.”
Afterword
I first learned about Batten disease when Brandon, a student at the school where I taught, was diagnosed. The school served around a hundred students with learning disabilities, and while I never had him in my class, he was just across the hall, and I got to know him through playground, lunch and extracurricular activities. I remember him as a gentle, sweet third-grader with a constant smile on his face, struggling with an already modified academic curriculum, and then losing his vision. We teachers all watched in horror as he and his parents endured weeks of testing and waiting before the diagnosis was confirmed. He left the school and it wasn’t long before we got the news that his younger brother had received the same diagnosis.
&n
bsp; Flash forward five years, where my teaching career found me at a second school for learning disabled in the same community. There was a beautiful middle school student, Taylor, who caught my attention as her Teacher for the Visually Impaired escorted her through the halls. Again, I never taught Taylor, but all the teachers stopped to chat with her as we passed her or saw her in the lunch room. She was totally blind and her speech was fragmented and often hard to follow, but there was always a palpable sense of warmth and compassion extended to her by everyone in the school. Ironically, she was the same age as Brandon, diagnosed by the same doctor in the same month with the same devastating disease.
I felt compelled to write about the beast that wrings the life out of beautiful, bright children. I set about researching the facts and creating a fictional family in which the “well” teenage sibling deals with the new realities of her brothers’ fate.
Batten disease occurs in an estimated two to four of every 100,000 live births in the United States, often striking more than one child in families that carry the defective genes. Early symptoms usually begin between the ages of five and ten and can include seizures or more subtle signs of slow learning, personality changes, clumsiness and stumbling. Eventually the children with Batten become blind and bedridden, and they often do not live past the late teens or early twenties. While medical researchers are getting close, there is still no known cure or treatment that can reverse the symptoms. Seizures can be treated with anticonvulsants and other problems can be treated appropriately as they arise.
The National Institute of Neurological Disorders and Stroke (NINDS) is the federal government’s leader in brain and central nervous system research. In recent years, scientific teams are making strides in studies that involve gene therapy, enzyme replacement, stem cells, drug screening and more. Many foundations around the country are actively raising millions of dollars towards research to fight Batten along with 7,000 other rare diseases. Taylor’s Tale, founded by the King family in Charlotte, North Carolina, is one of the world’s leading voices in this fight against the rare disease. I hope when you put this book down you will go to