Carly’s Voice (6 page)

In the winter of 1996–1997, we had come to realize that the terrible twos for Carly
would be nothing like those we had experienced with Taryn and Matthew. We struggled
to find ways to cope with her sleeplessness, bleating, and crying; her inability to
walk, play, or approximate the beginnings of language. Rather than enjoying Carly’s
childhood, we were consumed by the tedious task of pushing her from one doctor to
the next. While we had a clear diagnosis of autism and developmental delay, there
was no clarity on the best way to educate or care for our daughter.

Raising three kids—a seven-year-old and two two-year-olds—is challenging in an ideal
situation. That one of the two-year-olds didn’t walk, talk, or show any interest in
play made for a tedious existence. There were only so many times I could take them
to the zoo, where we could push Carly in her stroller while Matthew bounded ahead
and Taryn clutched my hand and waddled alongside.

We were also faced with Carly’s bouts of inexplicable sobbing. As she sat on the floor,
her face would twist up like she was in pain and she would shriek for hours. She would
raise her arms to be picked up, but once held, squirm to be put down. At first, my
heart would break. Tammy and I took turns trying to comfort her. Over time, as doctor
after doctor could find no cause for physical pain, frustration took over.

At a stage where most young mothers who didn’t work outside the house were beginning
to enjoy play dates and walks to the park with their two-year-olds, Tammy’s full-time
job was to scamper down the rabbit hole of doctors and therapy appointments in search
of an answer to the puzzle that was our daughter. It was little surprise to me that
the quest to find the broken link inside Carly’s brain would leave Tammy wan and without
energy.

Tammy’s exhaustion, however, was extreme. She would fall asleep any time she wasn’t
physically moving. Palm to cheek, sitting up, Tammy dozed while helping Matthew with
homework, at the movies, reading the newspaper. Even stress and noise couldn’t keep
her awake; she drifted off sitting in a straight-backed metal chair next to the MRI
scanner in which Carly (screaming, of course) was having a head scan.

Then Tammy began to cough. It invaded her body with such force that she would vomit.
Her physician put her on rounds of antibiotics to no effect. Nor could the respirologist
find anything out of the ordinary. It dragged on for months. We probably should have
been more mindful at the time, but when lost in the woods, even Little Red Riding
Hood didn’t notice she was chatting with a wolf.

During a quick visit to a friend in New Jersey, Tammy felt a lump in her groin and
her throat closed in fear. Her mother had passed away suddenly from cancer less than
six months after we had moved back to Toronto from New York in 1989. Her grandmother
similarly died in her mid-fifties. Tammy wondered if this was the family legacy.

She went to see her physician first thing Monday morning upon returning home from
her visit with her friend. After the exam, Tammy was sent down the hall for an ultrasound
of her pelvis. Technicians aren’t supposed to comment on their findings—good or bad
news is to be dispensed by the physician. Tammy shivered from the look of concern
on the woman’s face. The moment the ultrasound sensor rolled over her groin, Tammy
felt it hit speed bumps and knew it wasn’t good.

Rushing back to her doctor, she pleaded with the secretary to get the test results
immediately rather than be put in the queue and forced to wait an agonizing week.
Feeling sick and tired is bad enough without adding terror of the unknown. Not liking
what the ultrasound showed, the physician sent Tammy immediately to a surgeon for
a consult and biopsy. More waiting. New agonizing.

Even before excising the tissue sample, the surgeon calmly told Tammy he expected
to find cancer based on the size and shape of the lymph node. Preemptively, he booked
an appointment for her with an oncologist at one of Canada’s top cancer hospitals.

The test results confirmed the surgeon’s suspicion and after several meetings with
an oncologist, Tammy was diagnosed with lymphoma. She would need chemotherapy. Immediately.
Our lives, already one long doctor’s appointment, were about to get worse. I wondered
if calm and happiness could ever worm its way back in.

I was beginning to feel like Haiti. Or Sri Lanka. A place where natural disasters
just start coming and don’t have the good sense to stop. The minutes and hours that
followed the diagnosis are gone to me now. How we got through the next few days is
a complete blank. In fact, the next year would be a hazy maze of appointments and
treatment and emotional exhaustion.

With all of our energy going into Tammy’s treatment and daily life, there was little
left for scouring websites and following up on
leads to find suitable programs for Carly. We knew enough from the reading Tammy had
done that “early intervention”—therapy and programming—was the key to long-term success
with kids with autism. But there was no manual, no organization or expert who could
put together a comprehensive plan of action. It all fell on Tammy to coordinate.

We were fortunate enough to have been referred to a physiotherapist named Esther Gold
when Carly was one year old. The woman both had a private practice and worked part-time
for Northland, a school for children with special needs.

“You should see if they have a spot for Carly,” Esther told us. “She could receive
her physio
and
all of the other therapy she needs—and you wouldn’t have to run all over the city
to get it.”

Just as Tammy was beginning chemo, we begged our way into the already overcrowded
school, finding that one of the positive side effects of having cancer is the kindness
it can evoke from others.

As Tammy focused her efforts on her treatment, maintaining a positive state of mind
through yoga and relaxation classes, and caring for three kids, Carly began a daily
regimen of physiotherapy, speech-language therapy, music and art therapy, and social
skills development at Northland. Not a typical childhood experience, but one that
allowed us to feel some relief that we were doing the best we could for our daughter.
She would be taught everything that just comes naturally to most kids. We rejoiced
at small wins such as her learning how to hold a sippy cup, sit still on a chair for
ten minutes during music time, and sort blocks by color.

During this time at Northland, we were introduced to Barb Nash-Fenton, the speech-language
pathologist who would become Carly’s teacher, advocate, and confidante. Fourteen years
later, as I look back on Carly’s early years, I realize how life comes down
to happenstance. If we had not met Esther, would we have heard about Northland? If
not for Tammy’s cancer, would the school’s director have had the empathy to find a
spot for Carly? And if not for Northland, most certainly we would not have met Barb,
who would become a pillar in our life in the coming years.

In fact, through the year, we would learn that Tammy’s cancer had as great an effect
on others as it did on her. We came to realize that we all reflect our own fears and
faith in how we treat friends and relatives experiencing life-threatening illness,
but in the weeks that would come, Tammy learned to quickly put aside those who couldn’t
handle her illness.

Along with those in our life who couldn’t cope with our complex saga came others of
amazing kindness and selflessness. Often, these were people of whom we had few expectations—sometimes
complete strangers. At first it felt awkward when a neighbor of a friend would offer
to drive carpool or cook dinner for us. “Oh, we’re fine, thanks,” I’d say. Quickly
I learned that these people were not offering out of obligation but rather out of
a real desire to help, a need to make a difference. Turning them down was as selfish
as it was foolish. At the time, my father-in-law was dating a woman who did some part-time
catering. Throughout the summer and fall of 1997, Arna would arrive with boxes of
food she had prepared, wrapped, and frozen. When we tried to reimburse her for the
cost of the groceries, she quickly changed the subject or dramatically understated
the amount we knew she must have spent. And on hot days, she encouraged us to bring
all three kids to her house to swim and relax. As Matthew and Taryn slid down the
slide into the pool, I bounced Carly up and down in the shallow end, the water seeming
to wash away her anxiety, bringing a smile to her face. Tammy could relax and watch
the family; a seemingly normal summer afternoon.

Though she pushed through the year of treatment with incredible grace, Tammy would
constantly test the boundaries of her
mortality with her oncologist. Our children were young: the girls two and Matthew
seven. “Will I survive to see Matthew bar mitzvahed at age twelve?” she once asked.

“Yes, likely,” her oncologist, Dr. Reitman, answered matter-of-factly.

“How about their weddings?” Tammy pressed on.

“I’m not so sure,” again delivered with a cool evenness.

“How do most lymphoma patients die?” Tammy asked, her voice rasping. I looked down
at my lap. Some questions, I think, should not be asked.

“Pneumonia,” the doctor replied, and uncrossed her legs to stand. The appointment
was clearly over, as we had reached a subject she was not prepared to embrace.

Although I compartmentalized Tammy’s cancer like I do everything else, there were
times it could not be pushed to the corner. One night she was reading in bed and had
dozed off. The bandana she wore at night to keep her head warm had slipped off and
lay on the pillow next to her. Tammy’s skin was slightly gray from the previous day’s
round of chemo. I had to face the fact that my wife was very sick. I slipped into
our bathroom and shut the door, feeling a wave of panic creeping over me.

“What the hell are we going to do?” I murmured to myself. “What if I’m alone?”

My hands shook as I splashed my face with water. At thirty-five, this was not a question
I ever dreamt I would ask myself. Although I seldom allowed myself time to ponder
a life without Tammy, I was paralyzed momentarily at the prospect. Our focus as a
team was always on solving problems and fixing what was wrong. Cancer was merely a
thing to be fixed and moved beyond. A stumbling block, but not a final destination.
But the image of Tammy looking like a shadow of herself jolted me off track. I stole
one of her Ativans and crept back into bed.

Excerpt from Northland Educational Centre, June 1997:

Sandra Welsman, Registered Physiotherapist

Carly is a sweet 2
½
year old girl with global developmental delay, possibly P.D.D. and ASD on the severe
end of the spectrum. She started at Northland in March 1997 in the Junior room and
has made steady progress in all areas . . . she has recently acquired the skill of
walking a few steps with one hand held. Our goal for Carly is independent standing
and walking. She is following the MEDEK program of exercises. Carly is resistant to
being handled and will try to fight out of exercises . . . It is recommended that
Cary continue physiotherapy over the summer . . .

Excerpt from Northland Educational Centre, June 1997:

B. Nash-Fenton, B.Sc., D.S.P., C.C.C., reg. CASLPO Speech-Language Pathologist

Carly is beginning to understand language at the single word level when the content
is very concrete . . . parents should attempt to model simple labels for objects,
actions, prepositions, etc. Keep utterances short.

Carly demonstrated ability to make a choice between two actual foods, she was introduced
to pictures . . . establishing eye contact during the exchange is ongoing goal. Carly’s
feeding skills are also being monitored by myself and an Occupational Therapist. She
currently is attempting to drink from a cup, although requires assistance to remember
to close her lips after drinking to keep liquid in her mouth . . .

Excerpt from Northland Educational Centre, June 1997:

T. Ruben, Occupational Therapist

Carly continues to make progress as presently reassessed on the Insite Development
Profile . . . She removes her Velcroed shoes, socks, pants and shirt independently
as long as they are loose. She pulls off sleeves herself, a skill we struggled with,
and pulls shirt over her head. Carly is able to assist in putting on her clothes.
Carly is able to jump with two feet off the ground . . . now mounts riding toys unassisted
and can push herself forward. We have started teaching steering with the bike on the
Miller Boards so that her fear of falling off will provoke her to solve the problem
and “turn” her wheel . . . Carly is an affectionate and fun child. Her self-stim behaviors
of rocking and eyes to the ceiling are still prevalent, however, when she is engaged
these diminish. This is why a one-to-one shadow staff is crucial in Carly’s early
years . . .

During her treatment, Tammy was encouraged to practice yoga and take a course in visualization.
One day I came home to find her with a small Ziploc bag, filling it with dried lentils
and pinning it to the bulletin board that hung over her computer. Tammy spent many
hours online researching both lymphoma and autism, the two forces that controlled
our life. Every time she looked up, she would see the bag of lentils. “They represent
teeny tiny lymph nodes—the size they should be if I were healthy,” she said. Tammy
put an identical Ziploc under her pillow. Occasionally, under her breath, Tammy would
sing a song she had made up, invoking her lymph glands to shrink and the cancer to
leave her body. All this from a woman who claimed cancer was
not
a battle.

The months of Tammy’s treatment went well. As summer gave
way to fall, the cancer retreated, leaving us in a new permanent state of limbo. Tammy’s
is a wait-and-see form of cancer.