- Excerpts on the following subjects are included
below.
-
- From Music
in the Midst of Chaos:
- - on Adversity
- - on Character Building
- - on Confronting Disappointments
- - on Some Professionals
- - on Taking Risks
- - on Parents of Special-Needs Children
- - on Parent Advocacy
- - on Planning for the Disabled Person's Future
- - on Siblings of Disabled Children
- - on Facing the Future
- - on Writing This Book
- - on The Importance of This Book
On Adversity:
I have heard people say that I seem so cool and collected
about everything that nothing seems to throw me off-center. Some of
that is just my personality. Some of it is an artificial poise that I have
learned, to cover up my not knowing what to do or say. But some of that
demeanor is the natural result of living with the incredible package of
goods which "special" families must endure. In some ways, it seems
that our child's disability has chewed us up and spit us out. But when the
mill of life pulverized us the worst, most of us were re-formed into very
strong people! At times, it seemed like we have had to practically take
on the world in defense of our special-needs child. Some of the barbells
with which we've done calisthenics have been extremely heavy, and we have
developed some incredible grit. It is called making music, in the midst
of chaos. [Chapter Title: Rubber Band Response - page 155.]
On Character Building:
I thought it was just my imagination that we have become
so different from the pretty people. Lots of things make people different.
How could I categorize these people so glibly? I've had a quarter-century
to ponder these things, to observe the lives of people who seem to have
everything going their way. I have come to understand that we are
the fortunate ones because we have had to fight so hard. Our battle scars
may have left us beat up on the outside, but we must be gorgeous on the
inside! [Chapter Title: Pretty People - page 95.]
On Confronting Disappointments:
When the reality (and finality) of parenthood settled in
on me, I had enough background to know that Trista was a difficult baby.
She was colicky, often melancholy and aloof, and she had rashes on her face.
My greatest fear was that she would grow up with a bad case of acne because
my doctor said there was a correlation between infant rashes and teenage
acne. As I look back on it, I'm sure we all would gladly have traded the
complex neurological problems that she had ahead of her for a bad case of
teenage acne! [Chapter Title: Developmental Delays & Depression -
page 15.]
Since 1984, we had just been "coping with Tourette
Syndrome." Suddenly, in 1991, we found ourselves dealing with an adult
child who was "mentally challenged." It has taken many years for
me to concede to her labels without experiencing a lump in my throat. Even
today, I sometimes find it difficult to swallow. [Chapter Title: Rubber
Band Response - page 158.]
Did God "do a number on us" with Trista? No way!
God has blessed us beyond measure with this very special child, and I shall
be eternally grateful. It is because of Trista that I met Jesus Christ as
my Savior. It is because of God's amazing plan that I serve the Lord today.
In the midst of all the chaos in raising this special daughter, God has
created some absolutely beautiful music! [Chapter Title: How High
is Your Mountain? - page 207.]
On Some Professionals:
Sometimes in the symphony of our life with Trista, it has
been the professional musicians who have created the dissonate chords.
Such was the case in this chaotic opus. However, the finale was spectacular!
[Chapter Title: Parental Pro sé - page 153.]
Your family and my family can attest to the fact that sometimes
you can't rely on the physician, or the system, or the law to protect and
help someone you love deeply. And as you have so aptly illustrated in this
manuscript, "Ya Gotta Wanna." [contributed by Scotty Breummer,
sibling of a severely handicapped child. Chapter Title: What About the Siblings?
- page 191.]
On Taking Risks:
It is small wonder that I have heard advocates for special-needs
children called "Mothers from Hell!" I'd be proud to have that
label because I know in my heart that we mothers who fight so hard
are a special gift for our children. To the opposition, we may seem like
mothers from hell, but I think we're probably really from heaven!
[Chapter Title: Mothers from . . . Heaven - page 113.]
On Parents of Special-Needs Children:
Sometimes we become so involved in our children's problems
that we tend to lose our own identity. [Chapter Title: Mothers from .
. . Heaven - page 111.]
Parents of special-needs children belong to a tightly knit
fraternity, penetrable and fully understood only by those who have paid
the price. [Chapter Title: Mothers from . . . Heaven - page 111.]
On Parent Advocacy:
- "To light a candle is better than
- to curse the darkness."
- Eleanor Roosevelt
My philosophy has always been that the parent is
the best advocate for the child, providing he or she is able to represent
the child. So it never even occurred to me to hire an attorney for this
minor variance. We had battled teachers and school districts and appealed
state rulings before, and we had always won. I just gathered up my paperwork
and my righteous indignation, and launched yet another battle, with winning
on my mind.
"Hell hath no fury like an angry parent."
[Chapter Title: Parental Pro Sé
- page 143.]
On Planning for the Disabled Person's Future:
- "The best thing about the future
- is that it comes one day at a time."
- Abraham Lincoln
The process was not something we planned and scheduled
on a calendar. The years passed, needs presented themselves, and then something
in Trista's life usually triggered our next move. We just walked in the
light that we had at the moment, always looking for a brighter flashlight.
SSI. Sterilization. Vocational Rehabilitation. Special Needs Trust. Guardianship.
Housing. We knew what our child needed, and the technical solutions followed
quite naturally as we kept our ears and eyes open. That is futures
planning. [Chapter Title: Appendix - What will Become of My Child? -
page 256.]
On Siblings of Disabled Children:
Siblings of special-needs children have a difficult station
in life. They are caught in the web of incredibly complex family sagas.
I have often compared siblings of disabled children to children who contract
AIDS from a life-saving blood transfusion the injustice of their burden
is almost unspeakable.
It is my opinion that being the sibling of a disabled child
is even more difficult than being the parent! One can judge for himself:
the following accounts have all been written by siblings of severely disabled
children. [Some of the names have been changed.] The life stories are as
individual as the people, and even within the same family, siblings lives
are touched in remarkably different ways. The seldom-heard melody that weaves
through all these scripts is that siblings are deeply impacted and forever
changed when disability visits the family. [Chapter Title: What About
the Siblings? - pages 189-190.]
On Facing the Future:
Guardianship is just one more milestone along the road
tenuously traveled by most parents of severely disabled children. The intensity
and the longevity of the individual battles to win each milestone varies,
and the human cost is without measure. While I was in combat on our DDD
appeal battle, there were times that I thought the emotional trauma would
cause me to perish on the spot (and I am not normally a weak woman). In
contrast, the guardianship procurement was a "piece of cake."
In spite of the fact that the price of some victories is
greater than others, no one milestone is more important than another. They
are like the stone walls in the Yorkshire Dales, which separate fields and
define property lines. Every stone used in the fence-like structure is a
slightly different size and shape, but they are all part of the composite
that makes the wall strong and unique.
I would like to bravely proclaim that guardianship was
the last of the major battles we will need to fight on behalf of this child.
There is a resolute peace in considering that prospect, and I yearn for
that station. Nez Percé Indian Chief Joseph said it "I
will fight no more forever." In my head, I can affirm that it seems
to be a true statement for us too because in this journey on behalf of our
disabled daughter, I don't see any ground that we haven't already covered!
Nevertheless, in my heart I know that there will always
be some sort of challenge looming on the horizon. That's just life. Once
a parent, always a parent. We're getting a little older each year, and we
are more battle-weary. We will assault future problems because that is just
the way life is when you are a parent of a special-needs child. We will
be a more worthy adversary for our opponent because of our experience gained
from past conflicts. And we will be more resilient because of our battle
scars. One day we might be too old and senile to care for our adult child.
Probably only then will we "fight no more forever." Trista's sister
has been well-groomed to pick up the cause whenever that day comes. We have
done everything we could do to make the way smooth for them both. We have
always had sufficient help whenever we have done anything for Trista
and Tia will have that same expert assistance.
- "Where does my help come from?
- My help comes from the LORD"
- Psalms 121:1b-2a
[Chapter Title: Guardianship - pages 174-175.]
On Writing This Book:
Today it became so clear to me. I am to write the things
He has shown me. Write about the music of my own life there was an
entire symphony that was composed while we raised two special-needs daughters.
Write about our family's continuing saga on the human rights battlefield.
Write about what I have learned about the obstacles we have overcome.
And write about Tourette Syndrome. [Chapter Title: Preface · Winter
1995 - page 4.]
On The Importance of This Book:
And that is why what you are about to read is so important
to understand the heartache, trials and triumphs of raising a special-
needs child. [contributed by Dr. Michael J. Johnson. Chapter Title: Foreword
- page xiii.]
Copyright © 1999 Carico Press
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