In HIS EYES
He screamed with all his might as
he heralded his arrival into this world. The man standing beside the doctor was
speechless as he stared at his newborn son! At that very moment, the presence
of this life form in front of him has made him a father once again. A father to
a second son!
The nurse practitioner checked him
out and after counting his fingers and toes, she declared with much delight,
“He’s perfect!”
He came with a full set of deep
dark brown hair crowning the most perfect baby head, framing the most perfect
baby face. He came in the most perfect
way, perhaps, the only thing he needed at the time of his arrival, was a
perfect haircut!
He was named after one of the greatest Bolivian
Soccer players, a superstar athlete, his parents never even knew existed until
a couple of minutes before his journey to the outer world commenced. Until the
very hour he was to be born, his parents were still undecided on what to name
him. They had known that “it” was going to be a boy. The World Cup of 1994 was
on and they watched as this Bolivian wonderboy of soccer scored a goal, his
name flashed all over the Hospital TV monitor. Erwin “Plantini” Sanchez, his
name was, that world-class soccer player, so Erwin the baby’s name was to be.
His mother had always wanted the
name “Nathaniel”, “meaning a precious gift from God.” So it had come to pass
that this mighty creature was to be named Erwin Nathaniel. It might have been
coincidental or perhaps a touch of fate, the baby’s name derived from a
champion, ERWIN added to it the middle initial N had become the anagram of the
word WINNER! Both parents smiled as they realized this, indeed the greatest
beginning one could hope for!
Erwin passed all his physical
milestones with flying colors. In some, like crawling and walking, he shattered
the record that his older brother set.
He did all of his “firsts” earlier than what was considered “normal
range”. He was a climber with a great
sense of balance. This sure-footed toddler always mounted his landings! His
parents thought that a future gymnast was definitely in their midst.
Even his first words came earlier
than when his older brother uttered his, no baby talk, clearly and distinctly
he said “bubbles”. He would also call “daddy” whenever he wanted to be tickled.
Sometime between 18 months old and
his second birthday, Erwin had become quieter. Although still extremely active,
his speech development seemed to have been stalled. The once “talkative” baby
had suddenly stopped talking. His vocabulary didn’t increase. In fact, the
extent of his verbal language seemed to have lessened considerably. Everyone
noticed that he had become introspective. He had become for most parts, an
observer rather than a participant. The vibrant twinkle in his eyes had been
replaced with intense focus on anything that he chose to gaze upon.
When his second birthday
passed and then his third, his parents knew for a fact that there had to be
something “wrong” with their wonderboy!
For although he seemed to comprehend everything that was being
communicated to him, he didn’t seem to have the ability to express what it was
that he needed to say. So began his parent’s quest for answers. They insisted
for him to be tested, but his pediatricians didn’t think there was anything to
be worried about. After all, he was a boy and in general, boys tend to develop
language at a later stage.
His parents viewed videos taken of
his older brother when he was two and a half. The first-born son was already
speaking in sentences and engaging in conversations at that age. Erwin’s spoken
language was limited to a couple of words.
Pointing and grunting had made up for his lack of words. Again, his
parents attempted to ask the pediatricians to have him tested. Once again, the
experts said that there was not much indication that there was anything wrong
with him. Besides, they were a Filipino family and from what the professionals
knew, bilingual children usually developed language later too.
Frustrated with the system that
won’t allow them to have their son assessed, Erwin’s parents took on a
“vigilante” way of approaching this issue. Numerous hours were spent
researching, finding anything that might provide a definition to what was wrong
with their son. They were determined to find a way to put a label on this “thing”
that seemed to be limiting their son’s ability to speak his brilliant mind!
On the next baby well care
check-up, his mother brought massive documentation that she found on the
Internet and presented them to the pediatrician. There were a couple of diagnoses
that could fit the symptoms that their son had.
Nothing definitive though, except somewhere in the hundred pages or so
of computer printout, it indicated that due to his severe language delay, her
son was somewhere between someone having mild auditory problems to someone
having severe neurological abnormality.
The pediatrician finally agreed to
authorize some tests to be conducted. And thus Erwin’s evaluation “saga”
began. It started with a simple
audiology test. The results were conclusive, he could hear! The tests escalated
to having to meet professionals that all had the letters “ists” in their
titles: Audiologists, Psychologists, Psychiatrists, Neurologists, Pathologists
and all other kinds of therapists, Speech and otherwise! There seemed to be a
non-ending supply of so-called experts who were willing to pass on a diagnosis
to this precocious toddler!
After the dust settled, there were
numerous high profile signatures attached to the twenty-five-page document that
comprised Erwin’s diagnosis. “PDD-NOS, Pervasive Development Disorder, Not
Otherwise Specified” was the official label to this “thing” that made this
little boy so different from his peers. From the research that the parents did,
they knew that this was some sort of a “basket” diagnosis. In layman’s terms,
simply meant, the experts didn’t have any idea on what was wrong with him
exactly, thus the Not Otherwise Specified hyphenated qualifier tagged to it.
The coordinator that managed the whole evaluation sat with Erwin’s
parents and started with a disclaimer: although he didn’t exhibit all the
symptoms associated with the diagnosis, he did exhibit some. Because of his
severe language delay, he had been categorized as having symptoms of
Autism. PDD-NOS was under the umbrella
of the Autism spectrum of diagnoses. The coordinator further warned them that
if they desired to seek any kind of service at all, a diagnosis MUST be
rendered!
A diagnosis MUST be handed, so a
diagnosis MUST be accepted. Erwin was officially labeled with the dreaded “A”
word! With enormous mixed feelings,
Erwin’s parents wasted no time in finding a proper school placement for him,
which in simple language meant, another round of unending tests! As if the
rigorous hospital evaluations weren’t enough, another set of professional
“ISTS” had the need to add on their signatures to the already binder thick
diagnosis report.
A month shy of his fourth birthday,
a placement was finally found, Erwin started going to a special education class
that geared their curriculum to children much like him, living in silence,
interacting in a world that didn’t seem to cater to who they were.
His parents, in their desperate desire
to custom fit the world for their language-challenged son, began to put up
their defenses for the world that seemed to judge them for having borne a
somewhat “peculiar” child. The misinformed family members passed on harsh
judgments of equating the diagnosis with some sort of punishment for their past
transgressions, whatever those might have been! Their heritage that took pride
and put much emphasis in the legacy of excellence, didn’t quite know how to
deal with such an “imperfect” child. However, in the parallel universe that
Erwin was trekking on, he showed them an impeccable sense of perception, an
innate knowing of what is and what would be. On that first day of school, as he
took his mother’s hand, although no words were uttered, his mother heard what
his heart was saying, she heard it loud and clear, “Come follow me, let me lead
the way!”
A constant justification of his
quirkiness ensued. Every little abnormality was blamed on his diagnosis, in
retrospect though the so called-abnormalities were just simply characteristics
of any new arrival trying to get to know his brand new world!
The issue about the “lack of eye
contact” has always been a point of contention. Erwin’s gaze never lacked for
contact. On the contrary, he remains focused on the gaze of those speaking to
him. He continues to be engrossed in the moment and attempts to absorb
everything that the other person tries to impart. He listens with intent to
those who care enough to share their wisdom with him. In his parents’ native
culture where “looking in the eye” is an indication of lack of respect, Erwin’s
steady gaze has actually proven to be more of a judgment for the lack of
decorum. On more than one occasion, when his elders commented about his eye
contact, they didn’t complain about the quirkiness of it all, on the contrary
they were critical of his parents for allowing him to be too confrontational,
which was apparently very un-Filipino! Undeniably, it is with enormous regret
that these elders who have spent their whole lives wallowing in their own
miseries fail to see that with Erwin’s innate generosity, he offers nothing but
his total undivided attention, something, most of them so rarely receive from
anyone else!
As his
parents reluctantly accepted his diagnosis and the limitations that were
associated with it, they were prepared to live a life in the midst of a child’s
disability. They didn’t know where to find the courage to face such an
uncertain future. They were bracing for the worst that was yet to come, instead
as luck would have it, they found themselves entrenched in a world where days
were highlighted with small wonders. They found themselves in a world where
defiance to expert assessment was enough testament to merit miracles. His
parents found themselves amazed as Erwin gradually showed them the enchantment
of his world!
Being in their son’s presence
brought a large dose of calmness, the intensity of which they had never
experienced in their over-scheduled world. Erwin had a deep sense of serenity
in his eyes that his parents, continually mesmerized by his gaze, couldn’t help
but re-learn to trust, trust in their instincts and trust in the knowledge that
this magnificent being came here for the all the right reasons. Many a times,
circumstances proved that he came here to teach them, challenge their beliefs
and in the process, enhance their world.
Gradually, his parents learned to
abandon the knee-jerk defensive reaction to shield him from the outside world.
For those who are fortunate enough to be in his presence, Erwin’s limitless
ability for compassion, his ability to systematically ignore the mundane and
his heightened awareness of the essential opened up a more majestic view of the
universe.
Inasmuch as his parents wanted to put up the
highest barrier for his protection from the meanness of their world, Erwin’s
compassion wouldn’t allow them to isolate him from the so-called “normal”
world. Instead, in dealing with the rigors of living in a world that labeled
him “abnormal”, he responded with the only kind of love he was capable of
giving. The kind that was pure, untainted and unadulterated, the only kind that
could bring down all the emotional barriers between him and the people who
insisted for him to be just like them.
Words like betrayal and fear didn’t
exist in his world. Instead, he had an elevated level of unwavering trust.
Every time he graciously reaches out for your hand, he declares, “I trust you
with everything that I am!”
For his “normal” parents who have
been callously pained by all too many betrayals of trust, this intense honesty
that their son was capable of expressing was a much-needed antidote for their
seemingly dishonest, poisoned world!
In Erwin’s world there was no such
thing as “idle chat”. Each word uttered, carefully selected. Each word spoken,
sincerely meant. Each moment of silence, spent in retrospection! Never does he
waste any sentences to pass judgment on others, nor does he waste any thoughts
on ostracizing those, whose convictions are not like his. Instead, he has a
strong sense of “feeling” the presence of those around him. For those who are
generous with their resources, emotions and otherwise, he is attracted to, for
those whose energies are completely self-absorbed, he instinctively repels
from. However, unlike most of us who mask our instincts, to mold the
“repulsive” person in our own image of them, Erwin and many who are like him
have a great sense of respect for those who just want to “be.” Without
prejudice and not an ounce of effort to change anyone, they step aside and with
their whole being declare, “I respect you enough to let you, be you!” In his
world of non-verbal communication, there is no other kind of acceptance but
that of the unconditional one!
The silence in Erwin’s parallel
universe is a far cry from the noise-ridden airwaves that dominate the “normal”
person’s day. Perhaps, it is this precious gift of silence that allows him to
focus on the essential bonuses that make his world wonderful. The vibrant colors of the rainbow, the
fluttering wings of the butterfly, the fascinating marching ants, the amazing
feeling of having a drop of rain land on the tip of your tongue and last but
not least, the natural rhythm of a humming and nurturing universe…these things,
his parents have forgotten to appreciate until he came and served as a
reminder.
In his world of silent prayer, every sentence
describing the sensationally simple is an expression of gratitude. In his world
of silent meditation, adjectives like beautiful, amazing and wonderful when
learned are used with a great sense of appreciation. How many of us have used
these adjectives to describe our world lately? Perhaps, but a few!
As Erwin’s parents attempted to
re-define their own world with what he has brought into their lives, they both
realized that perhaps, the world they so wanted their child to fit in didn’t
seem worthy enough for such a graceful, magnificent soul! Perhaps, this
enchanting world of silence is how they wish their own world would be. Perhaps, the attributes of this wonderfully
non-judgmental world where truth and love reign was how their own world ought
to be!
Just as the season changed, the
parallel world that his parents existed in was altered dramatically too. Their
season of transformation had begun. For undoubtedly, Erwin’s reason for being
is to provide a glimpse of perfection in their seemingly imperfect world!
So instead of mourning for the loss
of their son’s future, instead of grieving for the loss of their dreams,
Erwin’s parents have learned to celebrate his diversity from the norm. They
have learned to “let go”, let go of their fears, let go of the expectations
that society insist on imposing upon them. They have once again learned to
trust, trust in the generosity of a loving, supportive and an abundant
universe. They have once again learned to live in the truth, truth that is
communicated not in the myriad of words but with the enormity of feelings. With the help of a gentle touch from their
incredible son, they have begun to view their own world in diamond shaped
angles, where the light emanates nothing but brilliance!
There is something so endearingly
familiar with this story. Perhaps because I am one of the fortunate few who
have been in the presence of Erwin’s magnificence. I have lived in his midst
and felt the greatest testament to what is. I have looked into his eyes and
seen his lust for life. I have been
gazed upon by his eyes and viewed the reflection of his passion for the
wonderfully mundane!
I was there when he arrived
perfectly packaged! I am his mother, the
one who wanted him to be named, Nathaniel,
“The precious gift from God”. Indeed, a bequest derived from divine
perfection!
Like any woman who has borne a
child in this planet we fondly call Mother Earth, I am apprehensive about my
son’s future. However, I do not dwell on that thought for I realized early on
that there really is no such thing as a “secure” future. I have been witness to
fully endowed lives that have been lived half-full. I now find myself in the midst of lives that
have been professionally labeled as “limited”, however made extraordinary by
the sheer determination to survive. For it is not important what you have been
given, it is what you do with what has been given to you that is essential!
The day they branded my son as
deficient was the day I likened my motherhood to Alice who landed in
Wonderland! Before my son’s diagnosis, I was never intent on learning about the
biographies of the “eccentrically” great, the likes of Albert Einstein, Michelangelo
and Andy Warhol. Their documented lives chronicle symptoms of Autism. In
addition to their greatness, they all shared the traits of having been
late-talkers as children and all three were extremely uncomfortable in crowds
as adults. The most striking characteristic they had in common was the
intensity of their focus to their chosen vocation. For if you think about it,
what “normal” person can spend years atop a church, away from the maddening
devotees, to create such a masterpiece as the Sistine Chapel ceiling? What “common” man can visualize the flawless
beauty of the statue of David in an ordinary slab of Italian marble? What regular patent clerk can get intrigued
enough to figure out the Theory of Relativity? On the same trend of thinking,
which “average Joe” can find the existential meaning of life by painting a
giant version of a Campbell’s soup can?
I do not have currencies by the
millions to start a foundation to find a cure for what ails my child. I am but
a lowly suburban mother who has dedicated her time and energy to easing her
child’s transition to the rigors of normal society. I am a woman who in the
process has found the most vital piece of her humanity, the one that defined
the purpose by which she chose to be in this lifetime in the first place.
I do not have a grand illusion of
educating the masses about my son’s “disabilities” in order to justify his
existence or that of mine. I do however have a dire need to share my
experience. I would like to put whatever wisdom I might have garnered from this
process, somewhere in this world’s consciousness. I would like the rest of the
“normal” world to know that there is a parallel universe where a multitude of
“non-normal” exist, where mundane rules do not apply and where boundaries are
perceived as nothing but indicators of achievement.
History has generously provided us
with their splendor. Their eccentricity has produced most of what we now
treasure as masterpieces. Unfortunately for them though, the only entrance
ticket that the normal society is willing to accept is for these so-called
misfits to be nothing less than absolute geniuses.
Perhaps, in being able to chronicle
my son’s life, I can pay homage to the millions of children who have been
branded like him and their parents who have been harshly judged like us. Perhaps, in rejoicing in my son’s astonishing
endeavors despite the disability that limits him, I can somehow express the
deepest of gratitude to the teachers, caseworkers, therapists and all of the
people who have offered their compassion along the way. Perhaps, in being able
to slightly open the door to such a world, those who may choose to enter might
have a glimpse of divinity!
I do not know where my enigmatic
son’s roller-coaster path of enchantment will eventually lead us, but so far,
it has been a heck of a ride!
No comments:
Post a Comment