in a voice rife with emotion.
“Thank you, Sam, for bringing us
to where we need to be in this group,
and that is dealing honestly with
the way our lives have changed.”
I look up at Dad with admiration
wishing I could take back a few things
I’ve said recently.
I loop my arm through his
and lean in to hug his shoulder.
…where we need to be
…where we need to be
TIPS FOR THE FAMILY
I immediately like
the man at the front of the room.
He keeps a smile on his round, flushed face
and strokes his beard absently
as he talks.
I can feel Dad relax.
I remember to take out the notebook
Mia made me promise to bring.
He’s not long into his talk,
“Tips for the Family,”
before I realize I’m scrambling
to get down every word
as if my life depended on it.
I smile
when I consider that
maybe,
just maybe,
the life of our family
does depend on it.
I write (as thoughts race through my head):
take charge of your life
(yeah, right: out of control)
don’t let the disease always take center stage
(boy do we need help on this one)
quality time for self
(that means me, too!)
watch out for depression/get help if need to
(is that what the tears are about?)
accept help/suggest specific needs
(I need to talk to Juan)
educate selves
(is this where we start?)
promote loved one’s independence
(Davy at the piano, Trent in sports)
trust instincts
(mine, or just Mom and Dad’s?)
grieve and then dream new dreams
(really, is it that simple?)
stand up for rights as caregiver and citizen
(not sure I get this one)
seek support of other caregivers
(well, we’re here, aren’t we?)
MEMORIAL ROOM
My hand is tired,
my thoughts are flying
faster than prestissimo,
and a strange kind of energy
pulses clear down to my toes.
I wonder if Mia feels this way
when she comes from one of her
interviews.
“Good for you for taking notes, Claire,”
Dad says, breaking through my buzzing thoughts
with a side hug.
“Maybe you could type it up
for your mother. Man, that talk was
just what the doctor ordered,
don’t you think?”
I won’t zing him for his enthusiasm today.
“It was awesome, Dad. I’ll print it out
when I get home.”
The bearded guy catches up with us
and puts a hand on Dad’s shoulder.
“I’m Gary, and I’m pleased to meet you both.”
He asks Dad to go for coffee
and I welcome the idea to find a chair
in the lobby to text Mia.
She would just be getting out of third period.
U can b proud of me, writer lady. Just took
tons of notes. Have to admit there’s a
rush with it. That how u feel?
While waiting for an answer
I stroll towards the room I saw earlier
with all the people milling around.
The girl I saw in the meeting waves at me
across the lobby and walks toward me.
I remember her name from the introductions,
but she beats me to it.
“Hi, Claire, how did you like that meeting?”
“Hi. Yeah, I uh, really thought
there was some great stuff mentioned.
How about you?”
“Me, too. We found out about Brenda
and Jackson three years ago, but it
took my parents a while to get here. I think
we might be ahead of you.”
“Ahead?”
“I mean, it sounds like you and your family
got the diagnosis pretty recently. Right?”
“Oh yeah, right.” I point to the room
I’m curious about. “What’s the attraction
in there?”
She pauses, and her eyes turn sad.
“It’s the memorial wall.
You know,
the ones who have died
from Batten.”
I put my hand to my mouth
maybe to stifle a scream
or the tears
already stinging my eyes.
“It’s okay, Claire.
It was heavy for me, too,
the first time I saw it.
It helps
to know about it
before the names
appear.
It helps
to know about it
ahead of time.”
GOLD MINE
Dad doesn’t say anything
as he approaches
but his tight embrace
tells me he knows what
I’ve just discovered.
I don’t try to stop the tears
as I cling to him.
“It’s okay, baby. It’s okay.”
I’m aware Wendy is just standing there,
not gawking
but quietly waiting
for the storm to pass.
I pull away from Dad
and laugh through the last
sputtering tears.
“Thanks, Wendy. Thanks for
filling me in.”
“No worries, Claire. See you
tomorrow.”
Dad and I head to our room
and I notice Mia’s text
that came in earlier.
Yes! Proud of u.
Nothing like getting to bottom
of good story and u r sitting
on pure gold. Cya
Hmmm. Sure depends
on how you define
pure gold.
SORRY FOR MYSELF
Wendy seeks me out at breakfast
and I welcome her suggestion
to sit together at the Sib meeting.
She doesn’t seem to know any more
about it than I do.
I’m secretly glad
she lets on how she is a little nervous
like me. My nerves ratchet up a notch
when I see the room full of chairs
pulled up to round tables
centered with baskets full of
art supplies and big sheets of paper.
That always means group work,
something that doesn’t come easily
for me.
We both relax about two minutes
into the meeting when the presenter
keeps popping one-liners
and never stops smiling.
She must be related to Gary,
the bearded guy.
I try not to look too nerdy
whipping out my notebook.
“Teacher requirement,
missing so much school.”
I lie. Truth is,
feels like a security blanket.
Note to self, check with Mia.
Maybe that’s the whole point.
The joking leader lady
manages to keep smiling
while jumping into some
serious stuff:
“Show of hands,” she says.
“Sorrier for yourself
than the sibling(s)?
Depressed?
<
br /> Guilty for being healthy?
Need to be the good child?
Angry at (fill in the blank)?
Feeling left out?
Need to achieve double (or triple)?
Urge to talk to someone who understands?
Now go around the table.
Fess up to at least one of these gems,
then grab a piece of paper,
put yourself on the spot
and draw your hearts out.
You have twenty minutes.”
Eyeballs roll, obviously reassessing
the joking lady’s casual demeanor.
She means business,
but somehow
it feels good.
It’s a no-brainer for me
and maybe for the others.
No one takes long
to choose,
and papers start filling up
immediately.
It takes a few intense minutes
before anyone feels like talking,
then self-deprecating comments
about the art work
start rolling around the table.
I realize I’m not the only one
actually getting into this.
I mostly listen and stare at my picture
with a silent chuckle.
For not being an artist
I think I got the point across.
I’m sitting at the piano
looking
very,
very,
sorry
for myself.
PERMISSION
Before we break for lunch
we take turns sharing.
Some are clearly gifted artists
who have captured depths of emotion—
gut-wrenching,
soul-searing,
pain-ridden
facial expressions
accompanied by hilarious poses.
I’m struck by the contrast:
deep,
funny,
deep,
funny,
and a wave of remorse rolls over me
as I remember my words to Dad.
…I just don’t think it’s a good idea
to be all happy…
I walk out of the room
unable to talk
while my mind,
my whole being
processes the message.
I’ve just been given permission
to laugh,
to cry,
and
to fully live this life,
my life
that has been spared.
TRAFFIC JAM
The lobby looks like a traffic jam
just like it did that first day.
Wheelchairs and strollers
parked every which way.
Loud conversations,
bursts of laughter,
blank stares,
but in just four days,
rather than threatening to strangle me,
the congestion in this room
feels like a family party
that I must leave too soon.
I say good-bye to Melissa,
reach for her hand,
squeeze it firmly,
hug her mom, Sharon,
squat down to talk to Brenda and Jackson,
exchange email and phone numbers
with Wendy,
and then I scan the room
looking for Dad.
I find him in the Memorial Room
standing a few feet away from the Wall,
studying it like a fine painting.
I slip my arm into his.
He hugs me close
and we let the tears
gently speak what neither of us
can say.
THE ROCK
I sink into the window seat,
glad for the two-hour flight home
to process this other planet
we’ve just visited
where dying children live and laugh and play
in all stages of dying,
and people who care for dying children
live and laugh and cry and talk and do and be
and…
“It was something, wasn’t it babe?”
Dad reaches for my hand,
the one holding the rock.
“Tell me about this,” he says, smiling big.
I return the big smile.
“It was so awesome, Dad. At first
Wendy and I thought it was cornball
like kid stuff
but afterward, we agreed it was way cool.
Sharon was our leader
you know, Melissa’s mom,
and she had these river rocks
surrounding a jar of feathers.
We all got to pick one of each.
Maybe you can guess what they stand for.”
“Clueless,” Dad says, surrendering with hands up.
“Feather is for traveling light,
like shedding baggage—
the stuff, well,
like the stuff I’ve been carrying around,
maybe you, too,
dumb stuff like guilt, anger, resentment.
The rock is for dwelling deep.
This one’s not so easy…
figuring out what or who you are
deep down in your core, you know
solid,
peaceful,
rounded
like a river rock
and how you are going to
live it out,
especially
given your life circumstances
at the moment.
Dad nudges my hand.
“Do I get to see what your deep
side is?”
“Only if you don’t laugh
and if you recognize that I…
well, that I am a work in progress.
Sharon’s words, not mine.”
“Of course. I promise.”
I slowly open my hand to reveal the drawing of
a stick figure holding a bunch of balloons
and under it
the word
CELEBRATE.
Dad leans back in his seat and closes his eyes.
“I’m proud to call you my daughter, Claire.
Let’s rest. We have lots of celebrating to do
when we get home.”
HOW IT FEELS
My cell starts going bonkers
as soon as the plane taxis
towards the terminal.
Mia: Whoot! Whoot! So proud of you!
Tara: OMG go girl! BTW I knew u could do it.
Juan: Calls for a celebration!
I chuckle that my choice
of an intense four-day weekend
in Cincinnati has earned points
with my friends.
I remember the group therapy day
at Schmoozies and figure
this must be an extension of that
awesome “we’re hear for you” moment.
Another ping:
Carlos: You rock, Claire!
And another:
Kyle: Claire in the winner’s circle! Yay!
Winner’s circle…
Winner’s circle?
I nod absently as Dad waves from
the luggage carousel
and I dial Mia. My watch tells me
she should be just about sitting down
to homework.
“I’m dying to hear all about
Cincinnati, but first
how does it feel?”
“Well, I’m totally exhausted but
it’s like I just pulled an all-nighter
to cram for a test
and now I’m ready to nail it,
know what I mean? Mia,
it was so awesome and…”
“I’m sure it was awesome, but wait,
you don’t know, do you?
I can’t believe they didn’
t call you
or text you or something…”
“What are you talking about?
I’m the exhausted one
but you aren’t making any sense.”
“You won the contest, you geeky girl.
You and your “Kite” won first place
in the whole state of North Carolina.
Now how do you feel?”
Numb…Davy…Too tired to feel
anything…Trent…Not like I thought
I would feel…Juan…Travel light…
too much baggage…celebrate?…
guilt…bad timing…way too tired…
“Hello, Earth to Claire, are you still there?
Did you hear me? YOU WON! Aren’t you blown away
or what?”
I see Dad signal for me to head his way.
He has our bags.
“Yeah. Blown away is right on, Mia. Listen,
I am excited, I mean, really, but, uh
brain dead, you know?
Frankly, taken by surprise.
We’ll catch up
tomorrow.”
I hear hurt, misunderstanding in her voice
as she hangs up.
I follow Dad to the shuttle bus.
Geeky girl, there is something
seriously
wrong
with you.
IN THE WINNER’S CORNER
Dad points the car to our house,
a twenty minute drive from the airport.
“Why so quiet?”
pause
Behind These Hands Page 10
