I
Am With You Always
She wandered down
the halls of the hospital in search of an escape, some door she could open that
would change her present reality. A door that would take her to the life that
was supposed to be, the life every parent envisions when their child is born:
perfect, healthy and beautiful.
She couldn't
breathe, her lungs screaming that this couldn't be real. Like an animal being
hunted, all she knew was that she had to get away, to find some quiet place
away from sympathetic and careful expressions. Her family and friends didn't
know what to say, they ached for her, their pain written on their faces, but at
the moment those faces made her want to scream in frustration and outrage at
the injustice of it all. She knew in her heart that all they wanted was to
help, to take even an ounce of her anguish away, but how could they? Nothing
could fix this.
She read every
sign on the walls, searching for something, anything, to offer her even a
moment of solace. Her eyes honed in on the words ‘prayer room’ printed on a
door she’d never noticed before. No one would think to look for her there. With
a twinge of fear she opened the door.
Inside was a
small room, blissfully empty and quiet, with a smattering of chairs and
cushions around the walls and a table in the middle covered in books of various
shapes, colors and sizes. The walls were painted a gentle blue, and there were
a few shaded lamps that lit the room; a relief after the industrialized
lighting in the hallways. She closed the door behind her and sunk down into a
cushion directly to the right of the door.
Her knees bent
and her head in her hands, she took a shaky, wet breath. The words the doctor
had said kept echoing over and over in her chaotic mind. “Keep him comfortable…
only hours left… nothing more we can do.” How had she reached this point? She
had fought for the last 15 months with utter and complete faith that her little
boy would survive this. That he would grow up and graduate high school, go to
college and probably become a doctor, like so many other survivors of this
wretched disease, and someday get married and have children of his own. How could
she just let go of that future? How could she let go of her hopes to see him
running down the halls of his school on his first day of kindergarten in the
fall or walking with his little sister in their neighborhood trick-or-treating
in the Harry Potter costume he had been talking about since February? How could
she give up on her little boy, her monkey, her partner in crime?
Tyler’s face was
always there in her mind, his gentle, loving brown eyes, the color of honey
when the sun shines through it, his perfect pink little lips, so quick to smile
and to give kisses, the wrinkle of his forehead and squint of his eyebrows when
he was focusing, the feel of his soft skin and small body folded perfectly into
hers. Five years wasn’t enough time to cherish the gift of his existence, it
wasn’t enough time to breathe in every ounce of his essence.
She knew he was
suffering; they had been giving him the maximum amount of morphine they could
give him, and it wasn’t helping to ease his pain. She knew she had very little
time left with her little boy, and yet she also knew she couldn’t go back into
that hospital room until she was ready to accept, for his sake, that he needed
to stop fighting. Until she was ready to comfort him and hold him and tell him
that everything was going to be okay – even though her heart was screaming that
nothing about this was okay.
She and her
husband had never talked about death. It had always seemed like they would be
betraying him to even think about the possibility of his death. Not that it
hadn’t been in the back of both of their minds for the past year as they
watched their precious, beautiful child get poked with needles and have poison
shot through his veins; as they hugged him tight as he cried and tried to
explain to him that the pain, and the poking, and the surgeries would help him
to get better. They had lived his death over and over again in their minds,
terrified, afraid, helpless, but the only thing that kept them breathing was
knowing that if they fought hard enough he would get better.
But he hadn’t. He
had gotten worse, and now she was struggling to find words to explain death to
a child who was barely five years old. How could she explain something to him
that she herself didn’t even understand?
Questions kept rolling around in her mind, “What happens when a person
dies? Where do they go? Is there such a thing as life after death? If a child
dies is there a special place for them? Are there angels there who love and
cherish them?”
She lifted her
head and looked closer at the room, trying to find some answers to the infinite
and unanswerable questions that were swirling around in her mind. She noticed
the books on the table and went to look closer at them. There were a few
different versions of the Bible, five or six other Christian prayer books, a
copy of the Quran, a book that looked to be in Hebrew, a Bahá’à prayer book,
and a number of books of poetry. She picked up one of the books of poetry and
opened it to a random page. The poem on it was titled “I Am With You Always”,
and as she read it she began to reflect on her own relationship with God and
with her loved ones.
She had been raised
by parents who believed in God. Their family had always said prayers every
morning and evening together. They had often talked about what a moral,
upright, conscious person looks and acts like and they had always worked hard
to put their faith and trust in God. She and her siblings grew up with the
understanding that the tests this life offers us are here to help us grow and
develop into better people, and that this is our purpose in being alive.
However, when Tyler got sick, she had a lot of trouble understanding why God
would take a perfectly healthy innocent child and subject him to so much pain.
It was so utterly unfair that he should have to go through this. How could
anyone find meaning in a child’s suffering?
People would say
“God doesn’t test us beyond our capacity,” but He did. He tested her beyond
hers, and she broke. She had begged and pleaded with Him over and over when
Tyler first got sick: to heal him, to make him healthy, to take her instead. But all she had seen was
him continuing to get more and
more sick and at some point, though she never stopped begging and
pleading, her heart stopped believing. She stopped believing that her prayers
have power and that this life has a purpose.
Sitting
in that prayer room, she realized
that she didn’t know what she believed anymore. She had unconsciously
been blaming God for the past year for Tyler’s illness. But now faced with the
death of her loving, gentle, pure-hearted child, though she was overcome with
sadness and anger, she was also grateful beyond any gratitude she had ever
felt. Tyler’s existence in her life had changed her into a person she never
would have become otherwise. His joy, his perseverance, his forgiveness, his
love and his own unquestioning faith in God were such an example to her. She
realized that she would rather have had Tyler in her life for 5 short years
than never to have known him at all. Tyler’s light, his kindness, his love, his
smile would live on within her and her husband and his little sister and all of
their friends who had met him and watched him grow. His story and his fight had
created around them a family of people who were better for having known him,
and not a single one of them would have given up a moment of the time they were
blessed to be in his presence. His life, not his death, would be his legacy.
Sitting in the
middle of the room, she knew her time was running short. She had to return to
her little boy’s hospital room. She had to go back and hug him tight and give
him permission to stop fighting and to fly away from the sadness and sorrow of
that room. Though she knew the months and years ahead would be difficult for
her, she had to believe that her little boy would be in a better place where he
would no longer be in pain.
And so, for the
first time in a long time she said a prayer, with faith that it would be heard
and listened to. She prayed that her son would be surrounded with love and
light and joy after he died; that he would be surrounded by rainbows and clouds
that told stories, shooting stars and ladybugs and butterflies, and that he
would give her some of these signs every now and then to show her that he was
happy and safe. She prayed that he would live his last hours peacefully; that
her sorrow and her family’s
sorrow would not keep him from knowing the love and joy they felt for
having known him. She prayed that his love would live on inside of her, and she
promised that she would dedicate her life to making him proud.
I
Am With You Always
