Two beautiful, ocean-blue eyes stared blankly from behind scratchproof
lenses. Her mouth gaped, and the sauce from the breadsticks she ate
moments beforehand stained the corners of her mouth. Her facial
muscles slacked and her shoulders slumped. Her mind had retreated to
that special place, her face utilizing its shield, guarding her
private thoughts.
Over the years, I watched my daughter grow from a premature infant into an
immature teen. I sat in the far corner of the room, watching Kali and thought,
“What could I have done? I did everything the doctors told me to do.”
Born six weeks early on an unseasonably warm winter day, Kali triumphed, insisting
her right to exist. She required no assistance in maintaining her unexpected
early arrival. Breathing and eating, just like any full-term newborn, four days
after her birth, the hospital released her into my care.
I remember the joy and the feeling of pride. Looking down in my
hands, remembering how wonderful it felt to hold Kali when she was an
infant. How was I to know something was wrong? That problems would
arise and the feeling of helplessness would soon conquer all?
Alarms rang inside my head as the time neared and passed for each
milestone, eventually achieved, but much later than the norm. Assured
by professionals, together, we muddled along. After drudging through
the years, dealing with daily bouts of unruly behavior followed by
excessive clinginess, she reached kindergarten age.
Day one…unsatisfactory behavior. Day two…harassing another student.
Every day unfolded another setback and on top of everything else, the
test results came. She failed the hearing assessment provided by the
elementary school. After thorough examination by experts, the results
discovered ninety-percent hearing loss in her right ear. Nerve
damage. Nothing could be done. It was an undetected birth defect.
In addition, the school’s aptitude evaluation implicated mental
retardation, which, also, was later confirmed by specialists, mild
’MR’, an IQ of 53.
How could this be? She looked normal. Unblemished skin, lively eyes,
ideal body weight and height, everything appeared to be average. But
what about her speech, slurred and unclear? What about her inability to make friends and get along with
others? And, last but not least, her inappropriate actions spoke for themselves. Annoying
and disobedient conduct caused everyone, including myself, to feel stressed and fatigued.
In spite of all the evidence, unwilling to accept my daughter’s fate,
I sought the advice of numerous health professionals and specialists.
In the end, each one confirmed the last. Struggling to cope and
praying for the patience to understand, nothing seemed to work.
Things only worsened day by day.
Gradually, as she slogged her way through the elementary years of her
life, an unsightly mass began to grow within her left cheek. Only
noticeable at first within her mirrored image, it eventually ballooned
into a shocking growth. Hemangioma, they called it, an overgrowth of
lymph nodes and blood vessels. Disfiguring and oppressive, an
operation proved to be a temporary fix, and yet, still another
inevitable curse.
Jumbled teeth and poor eyesight, for most, easily corrected. But what
about the task of keeping the lenses clean and the food cleared from
the braces? How can a child with such appalling hygiene accomplish
these things? How can I, a single, working mother, juggle the
numerous, menial, yet, essential tasks when financial situations
require my absence from home? Somehow, together, we manage, as time
spins round and round, never really moving forward, just simply
spinning.
Trapped inside a third-grader’s mind, her sixteen-year-old body still
grows, while her immaturity becomes more evident. Peers harass with
snide remarks and disdainful jokes. Adults gawk and whisper, condemning and forming opinions. I become angry
and defensive. She hides and retreats into a place of her own.
Sometimes, I wonder what dwells inside this place. Perhaps, pastures
of greenery and fields blooming with pale-blue forget-me-nots, their
delightful fragrance perfuming the air. Do blue jays soar overhead
singing a delightful melody, enchanting the land, while the sunshine
warms with a caressing touch? Perchance, each child is the same,
accepting each other. Not one singled out or ridiculed.
But then again, I see the look on her face, that bland expression of
emptiness. I recall those nights where deep, guttural slurs disturb
my sleep. Moreover, the look of hatred that stabs whenever I
reprimand. Yelping and snarling, our pets slink away. With an
uncaring hand, my daughter swats and then growls. These are the
actions of a troubled child. These major sirens blare deafening tolls
throughout my mind and trigger my worst fears.
What if the place she disappears inside is a wicked lair, where she
reigns as ruler and punishes all? Does she inflict great pain on all
who have scoffed, and feed on its darkness like a ravenous carnivore?
Ensnared by a life-long obstruction, fencing her mind within the realm
of an eight-year old, will society force her into a world crowded with
malevolence? Will the wide-eyed innocence of her fated childhood be
battered and bruised until she is no longer recognizable?
Although mental retardation is a lifelong condition of impaired and incomplete
mental development, my daughter is still a person. She still has thoughts. She
still has feelings, and she is every bit as much of a human being as any other
citizen in the United States.
She may be limited in her communication and social skills, but she has the divine
attribute in sifting through the sordid, allowing her to find the good in every
person. I admit, she may have self-help issues and members within the community
may consider her value to be zilch, but while helping another, her reward is in
knowing she eased someone else’s burden. In my opinion, this is a true gift.
Something extremely rare in an environment where one absorbs another merely to
gain access to a higher rung upon the ladder.
As a mother, I am helpless, unable to define or clarify. I cannot see
through her eyes, nor can I suppress the briars that pierce with
unjustified pain. I simply watch and I wait, straining to keep my own
thoughts at bay. If only allowed to cross the invisible threshold,
could I not ease the burden of indifferent mockery? Could I not
construct a barrier of satin and lace to soften the blow of reality?
Chase away her demons and carry her distraught body from darkness into
light? How do I protect, when I do not understand? How do my
daughter and I move forward when this moment in time has forever stood
still?
Each day we battle over simple tasks. Things another does
automatically without thought or reason. But then, just when I think
my limit has peaked, she does something refreshing, innocent and sweet. She draws me a picture of our family, stick
people with no clothing and dogs without mouths. Flowers bloom with bright, red petals.
Black birds soar high in the sky. The sun is always shining with rays that touch
the ground. We smile and hold hands, just like in the picture. There is no
struggle, no battle, just a glimpse of peace and a pause in the fight.
Together, my daughter and I, confront tidal waves of colossal height,
all the while, the undercurrent tows us beneath into depleting depths.
Sorrow’s tide rushes ashore, attempting to destroy the tiny, yet,
momentous sand castles she has managed to erect over the years. And
still we strive, more determined than ever.
I have no grand words of wisdom, no insight into a miraculous cure. I
have no answers to the questions that seem to multiply, as the years
pile atop one another, almost suffocating with their vast
continuation. I do have sparks of hope and treasured moments,
although the dreams I once had, have all but faded.
And more importantly, the helplessness that overwhelms my emptiness
can, in no way, compare to what I imagine my daughter must feel.
This, I cannot grasp, for she retreats once again, and reveals nothing
but an insipid expression.
Judge not, this is all I ask. First, walk within my shoes, while
plodding my daughter’s path. Keep your own condemnatory thoughts at
bay and experience for yourself the lack of acceptance and the
desperation of isolation. Once you have endeavored our narrow trail,
then, if you must, brandish your sword. Hold your head
high and laugh at my daughter’s fate. Walk away the victor, as she huddles and
cowers,
tears streaming down her face, regressing deeper into her own private space.
Life is full of tribulations. This is a fact. Everyone experiences
their own troubled bridge, their own canyon of quandaries. Not one
individual will be spared the anguish of realism. Reflect if you
will, upon your own field of pain. Remember the heartache and the
desperation of defeat. Expose your own wounds before your unclouded
eyes, and then imagine you are looking through my daughter’s lenses.
Statistics show, somewhere between two and ten percent of the prison
population in the United States suffer from mental retardation. This
is primarily because the mentally impaired are easily swayed and are
constantly seeking acceptance. Sometimes the vulnerabilities they
encounter within their daily routine, surmount and multiply,
aggravated by the enormous laughter and ridicule that echo within
their minds, thus, provoking tragic consequences.
If an eight-year old strikes another student due to harassment, are
the children held accountable or merely considered to be standing up
for themselves? If an adult, trapped inside the mind of an eight-year
old, lashes out, dispersing the demons cloaking the darkness of
society, are they to be held accountable or merely struggling to stand
with acceptance in the light of day? Should society stand liable for
their lack of acceptance and for rejecting what they cannot embrace?
Breathless and weary, I stand by my daughter’s side. The hairbrush now rests on
the bathroom counter. After begging and pleading, fighting and fussing, her
freshly washed, sandy-blond hair dangles from a navy-blue ponytail holder. An
hour has passed, sixty minutes of harrowing turmoil, simply getting ready for
school. Nothing comes easy. Nothing is trouble-free. Mental retardation,
maddened by the mental illness bipolar, can only foresight the countless battles
to be fought before the war of acceptance ends.
During the drive, my daughter and I remain speechless. We exchange a
faint ’I love you,’ and then she walks down the sidewalk toward the
high school. I wonder, what is she thinking and where does she go?
Will society, as a whole, continue to mock my intelligence by
pretending to recognize and understand, or will people finally push
their judgmental opinions aside and actually offer a sincere helping
hand?
My daughter will never mature. She will never be able to properly
function in a society that is unwilling to accept and welcome what
they cannot comprehend, and moreover, what they undoubtedly fear. But
one thing my daughter will always be able to do, something I admire
and commend, she will always be innocent to the extent of nature’s
wickedness. For every cruel word and for each tainted action she
encounters, with the gentle warmth of a kind smile, she is always more
than willing to forgive.
I ponder the future. What path will it unwind? What will become of
my beautiful daughter who will never establish an independent lifestyle? Someone who cannot count
money or grasp the concept of time. My daughter, whom is easily persuaded and
naïve to the vindictive ways of the numerous sharks stalking the sea. Will she be
another statistic, shoved by society, plunged into darkness, until she feels
propelled to lash back? One day I will wither and someday I will die. I will not
always be able to shelter and protect. When that day arrives, I wonder, what will
she think and where, then, in this society, will she go?