*A fictional short story based on my life.
“The Same Little Girl”
“I would like to schedule Gracie for an EEG,”
Dr. Moore said.
Sally
and Jess exchanged looks. They don’t
know what an EEG is or what it does.
“A
what?” Jess said with a puzzled look on his face.
“An Electroencephalogram, or EEG records the
electrical activity of the brain by picking up the electrical signals from the
brain cells. We are going to place
little electrodes to Gracie’s head to find out how her brain works. The test
will tell us if she is having seizures or not,” Dr. Moore said writing notes on
her chart. “Gracie will have to stay in
the hospital for a few days,” Dr. Moore said.
“Can
we stay with her?” Sally said. “Gracie
has never been without me since she’s been born.”
“Yes,
of course you can stay with her the whole time,” Dr. Moore said.
“Is
it safe?” Jess asked.
“Will
it hurt?” Sally asked.
“Yes,
it is safe. We do it all the time. There
is no pain other than the uncomfortableness of the glue and electrodes on her
head,” Dr. Moore said. Dr. Moore is a
short women, about fifty or so, with huge glasses that engulf her face and
short black hair cut straight around her head at the ear. Dr. Moore asked Sally
and Jess many questions about their family history, and the episode that they thought may be a seizure.
______________________________________________________
Gracie
had only started going to school a few month ago, after she turned three. Gracie’s pediatrician had recommended a
special school for her as Gracie had been falling behind developmentally. Gracie did not talk much and when she did,
there were only a handful of words she used.
There had even been talk of Gracie having Autism, but her parents
weren’t convinced. It was a Tuesday when Sally went to Gracie’s school to pick
her up; as she did every Tuesday. But
this time was different, this time Gracie’s teacher, Mrs. O’Neal, stopped Sally
in the hallway. Sally was not ready to
hear the truth about Gracie but she would soon learn the truth is harder than
the lie she told herself.
“Does Gracie have seizures? I think Gracie had
a seizure today.” Mrs. O’Neal said.
Sally
couldn’t believe her ears. “What did she
say? A seizure? My daughter doesn’t have
seizures.” Sally thought to herself.
“Excuse
me, what did you say?” Sally said.
“I
wanted to know if Gracie had seizures,” Mrs. O’Neal said.
“No, Gracie has never had a seizure,” Sally
said to Mrs. O’Neal, insulted at her even suggesting Gracie had seizures. Sally
had always wanted to be a mom, and when she had Gracie she knew she would stay
home and take care of her. Sally was a planner and there was no room in her
plan for seizures. “I am running late for an appointment. Can we talk about this another time?” Sally
said as she grabbed Gracie’s hand and walked down the hallway.
__________________________________________________
“This is going to be your home for the next
week,” the nurse said.
Sally
thought they were only going to be at the hospital for a few days.
“A
week,” Sally said.
“Well,
it could be shorter, we’ll see,” The nurse said.
The room looked like any other hospital
room. In the center of the room was a
big picture window with a royal blue couch that rolled out into a bed; in front
of it to the right was a hospital bed with white sheets. Behind the bed were wires, hoses, and
machines. To the left was a TV mounted to the wall. Underneath it was a built
in closet, and to the left of that was the private bathroom. In the left hand corner of the room was a
wooden rocking chair worn out from moms rocking their child to sleep. On the ceiling was a huge tinted dome, Sally
could still see the camera inside of it. The nurse caught Sally puzzling at the
camera.
“That’s
the camera. It is on 24/7, so if you need to change, go into the bathroom
because it cannot see you in there,” the nurse said as she pointed to the
bathroom. Gracie went into the bathroom
and changed into a hospital gown. It was yellow with tiny tigers all over it. Gracie sat on the hospital bed, playing with
her toys.
“All looks good here,” the nurse said as she
took Gracie’s vital signs. Then she left the room.
A
technician came into the room to put the EEG leads on Gracie. Gracie laid still while on the bed as the
technician stood at the top of her bed; he measured and mapped out her head so
that he knew where to place the electrodes. The technician put some type of
sticky glue on the electrodes on Gracie’s head.
It smelled like burnt rubber.
Gracie squirmed a little bit, but Sally put her favorite movie on the
iPad and let her watch it while the technician placed leads on her head. When
the technician was done, he wrapped her little head in bandages around her
chin; all anyone could see was her eyes, nose, mouth and chubby cheeks.
“Here
is the red button; you will have to push this every time Sally has an episode,”
the technician said. The button is plugged into the wall and clipped to the
side of Gracie’s bed. “One more thing,”
the technician said. “It is very important that you do not leave her
alone. If you need to go to the bathroom
or get something to eat, you must call a nurse.”
“Gracie
wouldn’t let me leave even the room even if I wanted to,” Sally said as the
technician left the room.
____________________________________________
The
last day of a person’s normal life does not announce itself; to those living it, it is just another
typical day.
“What
smells so good?” Jess said, as he walked into the kitchen and placed his black
leather brief case on the floor. Jess
was tall with sandy brown hair in a military cut. Jess’ broad shoulders filling
out the navy blue dress shirt, he stood loose his red tie.
“I am making lasagna, your favorite” she said
as she pulled the hot pan out of the stove and placed it on the counter Jess
had just cleaned.
“I
can see that. I think there is more on the counter than there is in the pan,” he
said laughing he grabbed the kitchen cleaner and a towel; he wiped the counter.
“You
look as beautiful as you did the day I meet you, ten years ago,” Jess said as
he put down the cleaner and placed his hands around her waist.
“The moment I say you in my senior English
class I knew I was going to marry you,” Sally said as she looked up at Jess and
kissed him passionately.
All
of a sudden they heard a loud thud and turned towards the sound. It was Gracie. Her head had hit the wall and she was lying
on the carpet, her hands and feet were twitching.
“Gracie
what happened?” Sally said as she ran to Gracie. There was no response. Her eyes seemed to look past her mother’s eyes
as if no one was there. Jess stood there watching in horror.
“Gracie,”
she said as she stroked Gracie’s head, “Gracie!”
Just
then Gracie turned her head towards Sally, “Mommy,” she said.
“Baby,
what happened?” Sally said.
“My
head hurts,” Gracie said as she sat up.
Sally scooped Gracie into her arms.
Jess softly kissed Gracie on the forehead followed by his wife. Jess put his arms around the both of them and
held them as Gracie fell asleep. After that day, normal took on a whole new
meaning for Sally, Jess and Gracie.
_______________________________________________________
Now, Gracie lay asleep on her hospital bed as
Sally sat looking out the window into the parking lot where people were
walking, driving and parking. Sally felt
like she was a prisoner stuck in a tiny room for days
“At least prisoners get to go out to the yard
once a day for fresh air and sunlight.” she thought to herself. “Not me
I was stuck in this tiny room, smaller than a bedroom for day or weeks maybe.” The smell of the cold sterile hospital room
had become familiar to her.
___________________________________________________
Sally
was watching Gracie. Gracie was smiling and playing with her dolls, when
silence suddendly filled the air. Gracie
stopped playing. Her body fell backward
as if she was fainting, but her hazel eyes were open. Sally ran to Gracie and looked into her
eyes. They were glazing over and her
pupils were dilated. Sally felt Gracie’s
body stiffening, shaking, trembling, and thrashing all around. Gracie’s mouth was half open. Sally could see her tongue shaking. She was drooling onto the hospital bed.
Sally’s heart raced. Her anxiety
rose. Her eyes started to tear. In these
few moments time slowed down seconds felt like minutes. A voice came over the overhead speaker, as if
God were speaking to Sally.
“Can
you please hit the red button,” the technician said from the overhead speaker.
She
searched for the red button clipped on the sheets of the hospital bed. Sally grabbed it hitting it so hard she
thought it would break. A loud beeping
sound and flashing lights came from the door of the hospital room. Nurses and doctors came running in and pushed
Sally aside.
“What
was she doing when it happened?” One nurse yelled at Sally.
“Are these the episodes you were talking
about?” Another nurse yelled at Sally.
All
Sally could do was nodd her head. “I
didn’t do anything,” she thought to herself, “they told me to push the button.” She opened her mouth but no words
came out. The tears were pouring down her cheek, there was no consoling her. Sally just kept her eyes on Gracie.
Gracie’s
body began to relax and once again, Sally saw the sparkle in her eyes. The
nurses moved, allowing Sally to walk over by Gracie’s bed. Sally gently stroked Grace’s hair, kissing
her on the forehead and whispered into her ear, “It’s going to be okay.” But secretly, Sally was asking herself, “Why her daughter. Why Gracie?” Gracie
closed her eyes and fell asleep.
Later
that day the nurse came into Gracie’s hospital room.
“Would you two come
with me, Dr. Moore would like talk to you,” the nurse said.
“Don’t worry about
Gracie, a hospital volunteer will come to sit and play with her.”
The nurse led Sally and Jess down the hospital
hallway to a door with a sign that read, “Family
Consultation Room.” When Jess opened
the door he noticed Dr. Moore was already in the room, sitting at a big round
oak table. Sally and Jess walked in and
sat across the table from Dr. Moore.
“We
were able to catch Gracie’s seizure
on video,” Dr. Moore said. “ And It is just as I suspected, Gracie
has epilepsy.”
Sally
squeezed Jess’s hand as she heard the word epilepsy; her worse fears were
confirmed. “There’s more” Dr. Moore
said, “We know what’s causing the seizures. Gracie also has Rett syndrome.”
Sally
and Jess were in shock as Dr. Moore explained Rett syndrome. She told them it was a chromosome abnormality
and would affect every part of her body from speech to motor function.
“Gracie
will slowly get worse and worse,” Dr. Moore said. “Most of the girls end up in
wheelchairs.”
Sally
felt nauseous. Jess’s mind filled with questions.
“What’s her life expectancy?” Jess said.
“There
is no cure at this time. You need to
prepare for the worst, most girls do not make it past their twentieth
birthdays,” Dr. Moore said.
Sally
just replayed the words over and over again in her head, “prepare for the worst.”
Jess
listened to Dr. Moore as she rambled off numbers, percentages, and talked about
anti-seizure medication that Gracie would need. Jess spoke her scientific language, but
Sally just sat there nodding, not saying a word.
“Do
you have any questions?” Dr. Moore asked Sally.
Sally went blank; she could not think of anything. She was in shock as she shook her head side
to side.
“When
can we take her home?” Jess said.
“We
will take the leads off today and start her on the first dose of anti-seizure
medicine. If there are no side affects you can take her home tomorrow,” Dr.
Moore said as she stood up to leave.
Jess
stood up, followed by Sally. Jess placed his hand round Sally’s waist as if he
were holding her up. Jess shook Dr.
Moore’s hand. Mindlessly, Sally shook Dr. Moore’s hand. Sally was in shock, but she couldn’t stay
there for long. They had to tell Gracie.
_______________________________________________________________
Jess
scooped Gracie into his arms, careful not to pull on any of her cords.
“How’s
my little princess? Jess said.
“My
head hurt,” Gracie said as she scratched her head.
Jess
pulled Gracie into his chest and took a lollypop from his pocket. “Here you go baby girl, this will help,” Jess
said.
“Thanks,
daddy,” Gracie said.
“Gracie,
we have something to tell you,” Sally said.
But when Sally looked into Gracie’s eyes; she saw her own eyes staring
back at her. Sally saw all the things
her daughter would never be: a ballerina, a wife, a mother. Sally ran out of
the room crying with her hands covering her face.
Jess
looked down at this daughter and placed her on the bed. “Gracie, I will be right back,” Jess said and
he left.
Jess
found Sally outside the door crying.
Sally looked deep into Jess’ blue eyes and wondered where they would go
from here.
“I can’t do this, I am not strong enough,” Sally said.
“She’s only three years old.”
“Yes,
but she is a fighter and she will fight this,” Jess said. “We will fight this.”
Sally
just stood there with tears rolling down her cheek. Jess looked at her face and
wiped the tears from her face. She
thought about how her daughter soon wouldn’t be able to hold a doll, play a
game of kick ball, or even ride a bike.
Sally thought about how one day she would have to bury her daughter.
Jess
looked at Sally as if he knew what she was thinking. He pulled her into his chest and squeezed her
tight. Sally sobbed uncontrollably into his shirt.
Jess
grabbed Sally by the arms and shook her.
“I don’t care what the doctors say,” Jess said. “She is the same little
girl we brought into the hospital. This diagnosis doesn’t change anything.” Sally stopped crying.
Jess
was right, but Jess was wrong too.
Gracie’s diagnosis changed everything.
And together they walked back into Gracie’s room.
