|
|
By James Elliott
Parenting children with disabilities can be brutally difficult. Each of us
must deal with this fact on a daily basis, though most of us find it hard to
confront. How many times do you hear or read about this side of our lives?
The harsh realities that find us privately raging against everything? The
media usually offers inspiring, hope-filled stories about sick kids and
their brave, loving parents. These stories don’t paint a complete picture.
Would reading any of these stories prepare the new parents of a child with
severe disabilities for what lied ahead?
The lives we live as parents of these kids are routinely portrayed as
a-okay, as long as we show a “positive attitude.” The truth gets lost in
people’s need to maintain a strong, socially acceptable, outward appearance.
This need brings people too close to the edge of total denial.
In all honesty, it has been my experience that raising a child with sever
disabilities is generally not enjoyable. This is not to say that good times
never occur, but the times of true happiness are so few when compared to the
times of sadness, pain, guilt, pity of all-out exhaustion. I am upset when
people imply that I’m simply whining about my life. My feelings do not grow
out of self-pity or selfish regret; I have no room left in my heart for such
things. My sadness and pain come from the anguish of watching my child
suffer more often than not.
I love my son intensely, and I’m thankful that he is alive. But I refuse to
pretend I’m at peace. I wouldn’t wish my family’s life on my worst enemy.
I’ve learned a lot from our experience, but I compare my feelings to those
of a returning combat hero, standing under bright lights during some medal
ceremony. The soldier stands there blinking, trying to accept accolades from
the crowd, when inside all he knows is that he had to watch his buddy get
his guts blown out on the battlefield. He knows he just happened to be the
guy left alive to try to save his friend. This is not a peaceful knowledge.
He knows he survived, that’s all. There can be no peace with the rest, and
no denial of the nightmare he had to live through – not until someone finds
a way to set back time, to prevent that shell from exploding, to relieve him
of the painful memories of a loved one’s suffering.
My son, Reese, was born three months premature, after my wife went into
spontaneous early labor for reasons doctors could never explain. She was in
perfect health, did everything right, and Reese still came early. He was
yanked from the womb weighing just two pounds, in an emergency c-section,
and rushed to the NICU. There, he was hooked up to I.V. tubes, sensors and
monitors.
The doctors told us to find the hospital chaplain. Before my son was a day
ole, I watched a priest give him his last rites. All I could ask was a
simple question – what kind of God would allow this child to be born, just
to suffer terribly for a day or less and then die? What possible good could
come of this situation? I started to feel a deep anger, which, even now, I
grapple with daily.
Reese surprised everyone and hung on through four grueling months of brain
hemorrhages, spinal taps, transfusions, countless I.V. punctures, seizures,
brain surgeries, eye surgeries, abdominal surgeries and more.
The end result of his suffering was severe. Reese will live with permanent
blindness, cerebral palsy from the brain damage, and inability to swallow
most foods (he is fed through a tube in his stomach), hydrocephaly (an
inability of the brain to drain its own fluids – a plastic shunt in his hear
keeps him alive), microcephaly (stunted head and brain growth), a seizure
disorder requiring permanent medication, extremely limited physical ability
(he can’t roll over, crawl or walk) and a host of other medical problems.
I would step off a cliff with a smile on my face to prevent my son from
suffering anymore. But the simple fact is that I am in for a lifetime of
watching my brave little boy suffer in ways that will break my heart over
and over again. This is true for most of you also.
Surviving this life is what makes an exceptional parent truly exceptional.
It’s not the love for your child – love is easy; it comes unconditionally
for most parents. It’s not the faith – my faith is shaken to the core every
day. And it’s not the care taking – caring for any child comes with the
territory. In the end, its’ the strength to get up every single day and live
this life through to the next day, one crisis at a time, even as many of us
harbor the unique terror that we’ll probably life to bury our children. It’s
about the ability to stand up and somehow deal with this, to work, to smile
back at someone and say good morning, to understand humor and joy again, to
live in a world where other parents, who just don’t see the value of life,
beat their children or leave them on doorsteps. All of these things are
exceptional to me now. All take conscious effort every day.
You do not have to accept this life with thanks and praise, but you do have
to live it. The innocent child you created needs you to live it. For most of
us, the pain and anger will not decrease with time. It will become a
permanent part of us. It will destroy some of us; I’ve seen it destroy
individuals, families, relationships and marriages. For those of us who
survive, this pain only moves within us, from the front of our minds to the
back, where it lives and lies dormant like a dark shadow of ourselves.
Just stay aware of the pain and don’t feel negatively about yourself when it
creeps up on you. It happens to the best of us now and then. You’ll look in
the mirror and find yourself staring into something dark, behind your own
eyes and you’ll recognize it as pain. It’s just under the surface, all of a
sudden, as strong and real as you are.
Don’t be afraid of it – pain is life. Too often, it’s a large pare of it.
You need to allow yourself the freedom to acknowledge pain and vent it as it
comes up. Others may find you jaded, distant, aloof or just plain different.
You are, you exist on a level they cannot comprehend. It is a special plane
of existence – you know when you meet someone else on that plane. It’s in
their eyes and no words are necessary. It’s in the eyes of every parent I’ve
ever seen walking through the halls of hospitals and emergency rooms. For
me, it helps to remember that there’s only one place that’s free from pain
and, thankfully, I’m not there yet.
Some of us try to attach some spiritual purpose to what we go through with
out sick children. From the day Reese was born until now – he turned three
this year – my wife and I have tried to remain open to understanding our
situation. We have tried to find some good in it and we often do. Yet the
bottom line is that we believe we will never understand why Reese has
suffered so greatly for most of his three years. We have decided that if
some greater purpose exists, its true meaning will elude us as long as we
are in this life.
When I sit alone praying for my son, I sometimes pray with as much bitter
confusion as faith. When I turn on the television because I can’t sleep
nights, I see children in Bosnia hit with rocket attacks, children in Africa
starving to death, children all over the world suffering. At these moments I
have to stop myself from cursing what is good.
Life is good. Life is of God. I believe it is inherently negative to curse
what is of God, so I do not allow myself to do that. But I do not pretend to
understand this world either, and I cannot simply accept it with a smile.
The trick is to maintain the faith that chaos is not the norm in the
spiritual realm, though it is often all we can see from the earth.
James Elliott
Pasadena, CA
James Elliott lives in Pasadena, California with his wife, Marchelle, and
son, Reese, 3. James, an actor, is writing his first screenplay. He also
works as a property manager and bartender. Marchelle is a member of numerous
early intervention committees and provides support to current NICU parents.
Reese will soon begin attending a four-day-a-week special education
preschool program. His favorite activity is music; he loves to hum and clap
along with his favorite songs.
Reprinted with permission from Exceptional Parent Magazine (previously
published in “Fathers’ Voices,” Exceptional Parent magazine, December, 1995. Copyright, all rights reserved by EP. Access or subscribe to the EP
magazine at www.eparent.com or call
1-800 EPARENT.
|
 |
|
|
| |
There is an
energy in us which makes things happen when the paths of other persons touch
ours.
from the Monks of Weston Priory
|
|
 |
|
