What follows is the preface and first chapter. Please let me know what you think!
Preface
How best may we achieve our role as parents? I've often wondered.
Being possibly the
most arduous task any of us will ever face, there are no prerequisites
for the undertaking, other than requiring a marriage license and even that
is not entirely essential. It is ironic, therefore, that we spend most
of our life in studies of one form or another but devote little time to
the complex dynamics of child rearing. Having taken
marriage vows and being then blessed with offspring, we usually care
for that child by applying techniques our parents employed with us or
otherwise, renouncing those, opt to seek out our own strategies via
trial and error. Only in the eventuality of a grave crisis, do we
finally turn to literature on child rearing practices and, that
failing, resort to a salvage effort by seeking guidance from those in
the professional sector.
I, on my part, had no clue in how to raise a child
and engaged in the endeavor as well I could. The task would have been
daunting enough had our baby been healthy, but with the medical
problems that ensued, the challenge became frightfully overwhelming.
Even the doctors
and specialists could not quite prepare us in what lay ahead, as,
unfortunately, they not always knew the outcome themselves. And so,
with great uncertainty, we confronted one medical crisis after the
other, some of which occurred concurrently, hoping and praying that
each would resolve itself in due course. However, in spite of the fine
medical care our son was lucky to receive, not all his afflictions came
to a full resolution. Such was the case with the long, grueling surgery
he underwent for scoliosis. Though the 10-hour procedure was a
resounding success, the fusing of the vertebrae resulted in a trapped
nerve. Because of it, he suffers daily bouts of referred pain to the
right leg, the attacks being quite severe and unbearable, at times.
This is a malady, we are told, that has no remedy and will be with him
for life.
As if our son's
numerous medical difficulties were not burden enough to bear, he also
experienced learning and behavioral problems that highly compounded the
situation. The learning problems were a
veritable challenge in themself, putting extraordinary demands on us and
making it necessary to place our son in Special Ed classes, right from
an early age. No
less daunting were the behavioral problems, which caused
us grave apprehension and created a highly charged atmosphere in the
household. We sought to find relief through parenting books.
Unfortunately, they offered us little benefit since our son did not
respond to
disciplining in the "normal" manner. That meant we had to devise our
own methods in dealing with his disruptive behavior and required much
effort and ingenuity on our part.
The writing of this
book is not so much a memoir but instead represents a grand tribute to
my son and all that he's had to endure. The hardships we
encountered were, no doubt, countless, but in facing them as a family
unit, we overcame the insurmountable.
There is much to be
gained from the practical information passed on in this book, and I
truly believe that it makes for a worthwhile read on the part of every
parent.
Mario S.
Fedele One
The trouble begins
The baby turned out to be a boy, weighing in at only 4
lbs, 10 oz., but he appeared healthy, and I was happy as a lark. The year
was 1980; the day the 4th of Oct.
I wanted to name him Fabian, which translates to
Fabio in Italian, as I'd always liked that name. Unfortunately, I was
strongly vetoed on it by my wife, Ann. Since my dad's name was John, we
thought of that as a possibility. However, wanting to add a twist to it, we went
with Shaun, which is the Irish version of John. Another big influence
for settling with that choice was that Shaun means "God's gracious
gift!" Since that was how we regarded our little bundle of joy, neither
of us hesitated at going with the name.
Before long, trouble reared its ugly head. Because
of his weight, Shaun had to remain in an incubator, and that meant we
didn't get to hold him. Aching desperately to do so and cuddle with
our infant, it was an excruciating consequence to bear.
As if that wasn't bad enough, we started receiving
reports from the doctors and nurses that problems were surfacing.
Almost every day was wrought with disturbing news.
"Your son has a fast heart!" a nurse indicated,
constituting the first of a long list of depressing reports we were to
receive. We had no idea what the condition signified.
"Your son is short in stature and has a short neck!"
warned a doctor. Again, we had not a clue what the implications of this
pronouncement were.
The size in stature did not concern me much, I being
only 5' 5" myself, but the reported shortness of the neck cast grave
apprehension in me. I'd seen people who appeared to have hardly any
neck area at all and noted that their head movements were considerably
restricted. Because of these personal observations, as that was all I
had to go on, I envisioned my son suffering such a fate.
Still more dire announcements followed. The next one
was passed on by another one of the nurses. "Unless we feed your son by
a tube, he can't seem to hold his food down!"
This was to prove very significant. Though for the
moment, the doctors had no explanation to offer. Needless to
say, the situation only served to compound our worries (as if we didn't
have enough of them already).
Another complication that developed was discovered entirely on our own.
Arriving for our usual visit, I noticed a bluish
light permeating the incubator. "I wonder what that light is, hon?"
"Don't know, dear. I'm sure the nurse will fill us in."
As we reached the incubator unit, itself, I noticed
further that Shaun's eyes were covered with an eye shield. "I don't
like the looks of this, Ann," I said, "Something's wrong, and I'm going to find out what it is."
Rushing to the nurse's station, I asked with great
concern what was happening with Shaun.
"Mr. Fedele, your son has jaundice, and we're treating him
with a special light to help clear it up."
"Is it serious?"
"No, he has just a mild touch. It should clear up in a few days."
I went back to Ann and relayed the information to
her. I wanted to feel assured that we'd weathered the worst of it, but
with the way things had been going, it seemed we were caught up in the
domino effect and assurance did not come easily.
Next day, the tiles continued to fall as we received
more doom and gloom. "Shaun has a cleft palate!" one of the doctors
reported.
My understanding of a cleft palate was that it
was a
failure of the mouth cavity and the upper lip to fully close, thereby
leaving a noticeable defect. Shaun did not display that anomaly, so in
my confusion, I said, "I don't see anything
wrong. His lip seems fine."
"His cleft only affects the soft palate and the uvula."
Hearing for the first time that the condition could
be manifest to such a minor degree, I asked, "Will that affect him in
any way, then?"
"Yes, I'm afraid so. His speech will be nasal
and liquids may filter up and out his nose if ingested in large
amounts."
From my further understanding of the condition, I
knew well enough that it required surgery. Hesitating to voice my
concern, but needing to know, I formulated the next question. "Will
this need surgery?"
"In all likelihood, yes. It will greatly minimize
the nasal speech and will eliminate any discharge of fluids through the
nasal cavity."
Hearing that my son would have to go under the knife
was the last straw that broke the camel's back. I was so confused and
depressed that I didn't know what to do and wished I could block out
all the concerns weighing in on me.
Even though I'd reached the
saturation point, there remained another grave matter I was trying to
cope with and resolve. Being denied the opportunity to hold and cuddle
my son, seeing he still required the incubator, I was having great
difficulty in bonding with him.
Surrounded by so much hardship, my feelings came to
a head, and, in a moment of weakness, I blurted out to Ann the thought
that was occupying my mind. "Ann, perhaps it would have been better if
we'd never had this baby!" I felt so alienated and distanced from him,
I couldn't even bring myself to call him by name.
With her motherly instinct rising to the fore, she
admonished me severely. "Hush, Mario! I won't have you talk like that!
He's God's very own gift to us!"
What follows is the preface and first chapter. 