Carly’s Voice (5 page)

Fifteen years later I looked through the color-coded medical files and remembered
how much I had forgotten. True, Tammy had maintained the frontline role of investigator
in attempting to unearth the causes of our daughter’s issues; I worked to pay for
that which insurance or socialized medicine would not. But I was not completely absent.
Doctors’ clinical notes refer to my presence at appointments I have long since purged
from my memory. I have little recollection of the consultations with geneticists,
neurologists, audiologists, dieticians, physical therapists, occupational therapists,
developmental pediatricians, and psychologists that would become a full-time occupation
for Tammy. And after all that, after years of blood tests, skin biopsies, metabolic
studies, MRIs, evoked potentials, hearing tests, and God recalls what else, we knew
only this: Carly was, as her developmental pediatrician stated in her notes,
complicated
.

Scanning the doctors’ notes reminded me of all the things that Carly
wasn’t
. Most parents have a long list of comical stories from their children’s early years.
Once I lay sprawled across our bed, grabbing five minutes of quiet while the twins
napped. Just as I dozed off, Matthew pounded through the bedroom like Napoleon invading
Italy, chanting “stinky farty butt, stinky farty butt,”
and knocked over a framed photograph balanced on the nightstand. When he noticed what
he’d done, he contritely stammered, “I’ll fish stick,” meaning to say “fix it.”

Taryn made us laugh with her independence and vivacity. Taking toys out of the closet,
she would settle on the floor at our feet and happily play for hours. She always maintained
a sense of humor where her sister was concerned. Once Carly was lying naked on our
bed after a bath; perhaps she was three or four. Taryn picked up one of Tammy’s credit
cards that was on the nightstand and pretended to swipe it in the crevice between
Carly’s buttocks, announcing, “I’ll pay with credit.” She and Tammy laughed so hard
tears streamed down their cheeks.

A few minutes later, Taryn came back into our room and dropped her pajama pants to
reveal a Tootsie Roll poking out from her bottom. She squealed, “I have a fudgy butt!”
before falling to the floor in gales of laughter. Perhaps I should have been concerned
about my children’s scatological preoccupation, but it provided such comic relief
that we encouraged it.

Even Taryn’s sassiness had an innocent sweetness to it. She once called her nursery
school teacher
missy
. “My name is
Miss Whittington
,” the young woman corrected her. “Okay, Missy Miss Whittington,” Taryn said with
a giggle. Even at three she had a comic’s sense of timing.

But I cannot think of any such memories of Carly.

The pages that document the first years of Carly’s life are an inventory of inabilities.
“Working with Carly was hard,” noted her developmental pediatrician upon our first
consult. “I got her to sit at the table and take objects I offered to her, but she
was unable to stack cubes or put pegs in a pegboard. She did not respond to any language
cues. I heard some consonant babble, but no isolated words.” Even a year later, after
hours of intervention, Dr. Stephensen, a developmental pediatrician we saw regularly,
noted that “I still find Carly a
bit of an enigma, but one cannot deny that she has gotten a thorough workup with so
many consultants involved.”

Even when Carly did acquire skills, they were often used in ways that reminded me
that she was distinct from her brother and sister. Once she learned to walk, she immediately
began to run—generally headlong into dangerous situations like a busy street. Once
she found the joy in grabbing objects, she began flinging them—a plate of food or
a cup of juice. I came to appreciate Mari more and more. After dinner, she would sweep
and mop up the pounds of food Carly had flung (had she actually eaten anything?) and
take the girls out for a walk to the park.

For the hour they were out, the house was reasonably quiet. Matthew’s best friend
lived across the street, so the two were inseparable after school. Tammy would be
at her desk plodding through the reams of forms the government creates to discourage
those of us in need of help from applying for it. And I could sit quietly, read the
paper, and eat in silence for thirty minutes and ready myself for when Mari left for
the night and Carly was gearing up for round two. Not exactly a family meal, but we
were making the best of our distorted reality.

Perhaps we’ve never felt an a-ha moment with Carly because her progress was overshadowed
by her challenges. She finally learned to walk and, in a fashion, feed herself. She
could utter a few bleary words such as
mama
and
cackah
, meaning cracker, or
ooce
for juice. Even these approximations for language would soon evaporate like steam.
By four years old, she was not toilet trained and would awake in the middle of the
night and remain volcanic for hours. No sooner up, she would strip off her pajamas
(a skill in itself, her developmental pediatrician reminded us), rip off her diaper,
and jump about her room barking
ahhhh ahhhh ahhhh
. And then rock. Always the incessant rocking. The rocking became the manifestation
of everything I hated about Carly’s condition. It was irritating, destructive, and
unstoppable. “Ssshhhhh,” I would say, but it came out more like, “Stop, God damn it.”
In some ways it was best that Carly couldn’t speak; my expletives were often free-flowing.

Taryn, who shared the room with Carly, somehow slept through it. Either that or she
had learned the first lesson of growing up as the sibling of a disabled child: Lay
low. Tammy’s and my exhaustion and frustration from the Sisyphean task of remaking
the bed, reclothing Carly, and tucking her in left us in a perpetual short-tempered
state.

Tammy spent hours searching for someone who could help dissipate the hurricane that
was our daughter. We couldn’t find anyone up to the task, much less a cure. What simple
solution could there be to stop a thirty-pound child from hurtling her body full force
against a wall? We learned to improvise and tackle bits and pieces at a time. One
night I came in to kiss Carly good night and found Mari had put Carly in a tight-fitting
Lycra bathing suit over her diaper. “She has trouble taking it off and she seems to
like it,” Mari explained. We had read that some kids like Carly were comforted by
the sensation of snugness. Besides, if she couldn’t remove the bathing suit, she couldn’t
remove the diaper. It was a novel solution that we used until Carly became fully toilet
trained—a skill she finally mastered when she turned five. At least foraging in the
dark for her pull-ups and her pajamas was a thing of the past. Getting her to sleep
through the night would be something that would take another seven years, however.

In addition to being diagnosed with severe autism and oral apraxia by her developmental
pediatrician, Carly had been identified as having moderate to severe developmental
delay at the age of two. It was a broad and general expression that has replaced the
abhorrent term
retarded
and is used when doctors can’t identify any specific condition. “Carly has no specific
etiology,” is how they put it. Several
years later, I Googled
etiology
. I learned that it was of Greek origin and meant “the study of why things occur or
the reasons why things exist.” Greeks used myths to explain phenomena they couldn’t
rationalize. For all the answers we’d gotten as to why Carly was as she was, a myth
would have been as useful.

I didn’t blame the doctors for their lack of specificity. How could I? Carly couldn’t
engage in many of the diagnostic tests they tried. She didn’t follow multistep instructions
or tasks nor could she speak to explain what was going on inside her body. On occasion
she cooed when held and cuddled by Tammy and me, and often giggled and laughed with
her sister. Most of the time she was content to be adrift in her own world, sitting
on the periphery of ours.

As we dragged her from doctor to clinic to lab and back again, day after day, it occurred
to us perhaps we were merely trying to label and identify
her
. How many more needle pricks would we make her endure? Sleepless nights with electroencephalogram
leads attached to her little sweaty head? Evoked potential, hearing, and sight exams?
Skin and muscle biopsies? The repetitive narrative of providing oral history to each
subsequent doctor, nurse, and resident was enough to make us want to call it quits.
Through her early childhood, we had learned nothing that was helping her come back
to us, nothing that made her play with other children or even play meaningfully by
herself, nothing that would help her noisy mouth form intelligible words. We had diagnoses,
but little insight into what could be done to help Carly escape the whirlpool.

We were beginning to feel that enough was enough and decided there would be no more
physical suffering on account of science. “If it’s just information for information’s
sake and no cure will come from it, then it’s time to stop,” Tammy said to me one
evening, her body slumped on the couch, defeat on her tear-streaked face. We no longer
held out hope that we would discover a specific part of Carly that was broken and
could be easily fixed. Global developmental
delay, pervasive developmental delay, autism, oral-motor apraxia—all conditions, but
none of them specific ailments. Had she had cancer, we’d have known what to do. Had
she incurred brain damage or had a stroke, we would understand her condition. But
Carly’s affliction was like a blob of mercury: visible and dense and real, but try
to grab it and it jumped from our grasp.

Despite what doctors described in her medical records as “valiant efforts by her caring
and deeply committed parents,” we would never receive an a-ha moment, much as we craved
one. One dead-end street led to another. Somehow, life had to move on. Our other kids
were growing and developing. We were running out of referrals and recommendations.
And while our medical system is public in Canada, many of our therapies and consults
were beyond coverage and had pushed our credit line to the brink. “I feel like there’s
a button in her brain we just need to switch on,” Tammy said. But that button would
remain out of sight, out of reach. In our hearts, we had hoped to find a magic pill
that would turn Carly into someone else; someone who could speak, play, and be with
us. But that folly had to come to an end. It’s not that we would give up on our daughter,
but it was time to stop asking
why
, and start asking
now what?

Excerpt from clinical genetics report, October 12, 1997:

Dr. D. Shaet, Division of Clinical Genetics

Developmental milestones are delayed but have improved . . . she does not like laying
on her stomach and to move she shuffles on her buttocks. Carly’s fine motor skills
are delayed but she acquitted many milestones during the last year. She improved her
pincer grasp but does not like to touch objects and does not pile blocks. She makes
no attempts to put a puzzle together and does not scribble.

Regarding language, she has difficulties both in receptive and expressive language
. . . she does not follow more than a one-step command. Carly interacts with her sister
frequently, but not other children. . . .

The investigations done so far have failed to reveal any specific diagnosis. I explained
to the parents that I doubt if we will be able to further delineate her condition.
However, we wish to continue following her every 2 years and would like to be updated
of her growth, development and of any medical/neurological investigation done . .
.

Sincerely,
D. Shaet, MD, FABMG, FCCMG, FRCPC
Division of Clinical Genetics
CC: file, Dr. I. Tine (Neurology), Dr. D. Stephensen
(Developmental Pediatrics), Dr. J. Kobayashi (Neurology),
Dr. M. Goldstein (Pediatrician)

I am dreaming a dream I’ve had many times since Carly was born. The two of us are
sitting in the kitchen. Or maybe it’s the den. We are talking. Carly is talking. She’s
teasing me about something.

“How do you like my haircut?” I ask her.

“It looks like your head got caught in a food processor,” she deadpans.

I wake up laughing out loud.

Then I roll over on my side and cry.