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Carina was diagnosed
in utero with a
serious heart
defect. She has
undergone heart
operations and is
doing well.
PREFACE
All human life is
precious, and the
birth of a new baby
is just cause for
wild and exuberant
celebration. Sadly,
however, the birth
of a baby who is
considered
“different,” as a
result of one or
more medical
diagnoses, is often
perceived as a
“tragedy” by medical
professionals and
many in general
society. As a
result, the usual
new-baby celebration
is quashed, along
with the hopes and
dreams of the baby’s
parents. When a
baby’s potential
differences are
diagnosed before
birth, the situation
devolves even
further: physicians,
other experts, and
even family members
often urge the
mother and father to
terminate the
pregnancy. Little
thought is given to
the joys and
contributions this
baby may bring to
his/her family, or
the world, in
general. Instead,
the focus is on
“protecting” parents
from the anticipated
disappointment,
grief, medical
bills, or other
difficulties this
child’s birth may
cause.
But on a daily
basis, the love,
concern, and joy of
parents whose
children are born
with disabilities or
differences explode
the myth that
parents need to be
“protected.” Their
children—regardless
of how long they
live and regardless
of their medical
diagnoses—bring joy
to their families
and make the world a
better place, by
teaching all whose
lives they touch. In
this book, Madeline
shares the stories
of many of these
parents and their
precious children.
This book can
enlighten not only
parents and extended
family members, but
also medical
personnel and others
who hold positions
of influence. And I
hope this book will
cause us to examine
the perceptions that
drive our actions.
Consider, for a
moment, the
physician who
recommends the
termination of a
baby with
disabilities or
differences. He
believes he is doing
“what is best” for
the parents and the
baby—a baby who is
believed to have no
potential. But what
would this same
physician do, for
example, if his own
two-year-old child
were injured in a
car accident or were
diagnosed with a
serious medical
condition? Would the
doctor not demand
that everything
possible be
attempted in order
to save his child’s
life? Why is the
life of a baby not
yet born or a
newborn any less
valuable than his
two-year-old child’s
life? Would the
doctor not continue
to have hope,
regardless of
others’ opinions?
Would he want others
to “protect” him
from the
disappointment,
grief, or other
difficulties his
child’s condition
might cause?
Deep soul-searching
is necessary for us
to eliminate the
beliefs that the
life of an unborn or
a newborn baby is
less valuable than
others. Who has a
crystal ball? Who
can predict the
future? Who can
know, with absolute
certainty, that a
diagnosis is
correct, that having
a certain condition
means the baby will
live or die, and/or
that a baby will
never achieve
this-or-that? No one
has the right to
deny a child and
his/her family the
hopes, dreams, and
joys that are
inherent to human
life. And in my
twenty years of
experience in the
disability field, I
have met many
parents whose
children have defied
the odds, made liars
out of
professionals, and
made their families
proud!
When my own son,
Benjamin, was born
seven weeks
prematurely, the
physician patted me
on the shoulder, his
eyes filled with
pity, and muttered,
“Well, I guess you
can take him home
and do the best you
can…” Rather than
feeling sad, I felt
anger—he was
insulting my baby
son—and I was
determined not to
let others’ opinions
nor my son’s
diagnosis of
cerebral palsy (and
a few other
conditions) rule his
life! Today,
Benjamin is a
successful college
student who was just
inducted into Phi
Theta Kappa, the
national honor
society for
community colleges,
and he recently won
a national film
award. Despite
needing a power
wheelchair, other
assistive technology
devices, and a
variety of supports
and modifications,
he has always lived
an “ordinary” and
very fulfilling
life. As a child, he
was in “regular”
activities, like Cub
Scouts, T-ball, and
drama classes, and
was in general
education classrooms
at school (instead
of being segregated
in special education
classes). His
diagnosis cannot
define who he is,
nor his potential!
For too long, our
children have been
described as having
“birth defects.”
What a poor choice
of words—and this
choice has
frequently resulted
in the deaths of
many children. In
today’s society, if
we find a
“defective” product
in our homes, we
return it to the
store for a
replacement or dump
it in the trash. A
history of language
indicates that the
word “defective” was
not applied to human
beings until the
birth of the
Industrial
Revolution. Prior to
that time, shoes, as
one example, were
lovingly made by a
cobbler’s hands, and
each shoe was
unique. But with the
rise of machinery
and assembly lines,
all shoes were
expected to be
“perfect,” and those
that were not were
labeled “defective”
and were discarded.
Somehow, society
began applying that
standard to human
beings. Our children
may be born with
congenital
disabilities or
other conditions,
but these certainly
do not reflect
“birth defects” and
our children are not
defective.
Some children may
only be with us a
short time, but
their lives and
their contributions
are no less valuable
than children who
may live to grow
old. I will add my
testimony to that of
others in this
wonderful book: my
life and the lives
of my husband,
daughter, and son
have all been
enriched because of
what we have learned
and experienced as a
result of my son’s
condition. There is
not one thing I
would change about
my son: he is
perfect just the way
he is, as are all
children, regardless
of the diagnosis or
prognosis.
Our children need
us, and we need our
children. Our
children also need
us to have great
expectations for
them, for whatever
time we are
privileged to have
them with us. And we
need to learn from
them—our children
are our greatest
teachers. Their
lives and the
lessons in this book
provide much-needed
enlightenment on the
value of all human
life.
Kathie Snow
Parent, trainer, and
author of
Disability is
Natural:
Revolutionary Common
Sense for Raising
Successful Children
with Disabilities
Woodland Park,
Colorado
May 16, 2007 |
