The Journey

The Journey

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The Journey
A parent comes to terms with her daughter's disability
by Virginia Richardson

Reprinted from the Fall, 1997 issue of Pacesetter,
a publication of the PACER Center, Minneapolis, Minnesota.

Editor's Note: The focus of
this article is not on the child, but on the parent and how he or she comes
to terms with a child's disability. Although the author is not the parent of
a blind or blind and multiply disabled child, what she says seems relevant and
enlightening, so here it is:
When Deborah, my eldest daughter, was diagnosed
with epilepsy and mental retardation, I read books and attended meetings and
conferences that described parents of children with disabilities as being in
a state of chronic sorrow.
That bothered me. I felt that if my husband
died or if I developed cancer, there would be a period of intense grief and
sorrow. My living patterns would be permanently altered, but I would not be
forever in a chronic state of grief.
The writers and presenters used words such as
denial, guilt, anger, bargaining, sorrow, and finally acceptance to describe
stages of grief through which I was supposed to pass. They said the pattern
was the typical reaction to becoming the parents of a child with a disability.
Their language, however, did not fit what I was experiencing. My feelings did
not come in distinct phases, nor were they predictable. Rather they seemed entwined,
their boundaries blurred.
Instead of framing the experience of having
a child with disabilities as chronic sorrow, I believe I managed it as I would
any unexpected and life-altering event.
There was:

Initial reaction
Extreme feelings
Refocusing
Integration of the situation into my life.

Initial reaction
Research tells us that in times of high stress
(fire, accident, or storm) 15 percent of the people can take positive action,
15 percent are unable to act, and 70 percent exhibit odd behavior.
My actions encompassed all three categories:

I took positive action. I told my family and
friends about my daughter's disability. I sought information about mental retardation
and epilepsy. My husband and I talked about it a great deal.
I was unable to act. I went to bed and pulled
the covers over my head to shut out the world. I tried to forget. I bargained
with God to remove the disability.
I behaved strangely. I could not say the disability
words. It want to see anyone. I cried a lot. I did not want to talk to anyone
other than family about the subject.
Extreme feelings
I experienced a gamut of emotions: I was pessimistic,
fearful. How could I be a good parent? What if I didn't care for Deborah in
the right way? Did we have enough money to support her? What was the meaning
for our entire family? I saw my daughter through a limited lens; I saw only
her differences.
I was optimistic. Maybe the experts were mistaken.
Surely there would be a cure in a few years.
I was sorry for myself. Why did it happen to
me? How could I tell her grandparents? Would she live with me forever?
Looking back, my sorrow was not really about
Deborah's birth. Instead my feelings were about myself and my concern about
my ability to be the parent of a child with disabilities a responsibility I
did not understand.
Refocusing
As I lived with the reality of Deborah's diagnosis,
I began looking at Debbie and the world in a new way. She was a delightful child,
happy most of the time and very loving. She learned but in a different way.
I saw new possibilities, redefined my expectations for her, and found joy again
in her accomplishments. I also developed a new perspective of myself: I was
a parent who had a better understanding of Deborah's needs and the meaning of
a disability in her life and a parent who was able to manage the situation most
of the time.
Integration, the final state
The notion of having a child with a disability
became integrated into the fabric of my life and the life of our family. I still
experienced uncertainty and at times I was fearful, but on most days I lived
life looking forward, instead of continually glancing back to what might have
been.
As I became accustomed to living with Deborah's
disability, I found that a quotation from an unknown source described my perspective:
Life is not a problem to be solved, but a mystery to be experienced.
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