The impact of blindness on all family members is tremendous. Before the birth of any baby, we all have dreams and expectations about what the future holds. Expecting a child is a special time for most parents. Mothers and fathers love their baby long before it is born. They love the baby because they project onto their child all their dreams, fantasies, and expectations. For many parents, their hopes are realized when a healthy child is born. But for a moment try to imagine all these expectations and dreams destroyed by hearing the doctor say, "Your baby is blind." Parents are devastated. They experience a blow that is totally shattering. As Pearl Buck said when learning her daughter was mentally retarded, "All the joy of my life was gone."
Author Renee Nastoff, the parent of a child with a disability, eloquently described her pain when she wrote, "I fight the unseen enemy. I have reason for revenge but nothing against which to vent my outrage. My child is held hostage by a cruel twist of fate. Only a parent can comprehend the frustration of fighting an attacker that can't possibly be hurt. It is in the air all around me every moment of my life, overshadowing all decisions about my child, crushing and destroying the simple parental right to dream—about Little League, college, marriage, grandchildren. I can feel the enemy now, its fingers tightening at my throat, forcing what I thought were controlled tears. Sometimes it loosens its painful clasp, but never does it desert its hold on my life. I can't kill this stranger, and I can't break away. Yet it tries to force the very spirit of life from me. It will remain with me forever."
A parent experiences one of life's most devastating losses when a child is born with a disability. What the parent has lost is the anticipated perfect child—that very-much-loved-and-dreamed-of child to whom they have already become attached. Surprisingly, the degree of the baby's impairment is not always the crucial factor in determining the parent's reactions. The most important determinant is the parent's dreams for that child. Loss is the hardest thing that we, as human beings, experience. It is not an uncommon event that affects only certain people, nor is loss merely defined as death of a loved one. It actually touches each of us many times and in many ways in our lifetime. Loss shatters the dreams that are the most basic to a person's existence. Major losses with which we are all familiar include divorce, death, or illness. However, less profound losses can include the loss of physical attractiveness, career recognition, money, etc. The significance of the loss varies for each person and depends on how meaningful that particular loss is to the individual's identity. Loss is a common human experience cutting across all socioeconomic lines. The loss of the expected perfect baby is a major trauma in a family's life. The kinds of feelings that parents have in response to their child's visual impairment may be confusing to them. Feelings of shock, helplessness, fear, denial, depression, sadness, anger, guilt, disappointment, and uncertainty are natural and occur with intensity. Many parents have called this time a "mourning period" because the feeling of sadness is so acute. As one mother said: "I felt like my perfect baby had died and I had a different baby— a blind one." Another parent said, "I was so confused. What I expected to be the happiest time of my life turned out to be the saddest."
Grieving is a normal and spontaneous reaction to loss, but in our culture this normal reaction is often regarded as abnormal. Society may view people who are grieving appropriately as though they are behaving inappropriately. Grieving is the process that enables human beings to deal with loss. Yet parents report that the expression of their grief often cuts them off from the very support they need. As one father said, "I haven't cried since I was 12, but now whenever anyone asks about my son, I start to cry. I know that I make people uncomfortable and they often try to avoid me." This father's expression of his feelings is a healthy response that will eventually enable him to cope with his grief. It is part of the process of detaching from the child he wished for and forming an attachment to his actual child.
Another important and universal reaction parents express is an overwhelming need to understand the reason for their child's impairment. Parents say:
"The question 'why' is always in the back of my mind. Am I to blame?"
"When I was pregnant, I moved the furniture."
"When I was pregnant with John, I couldn't quit work. We had no insurance, and I sometimes think maybe I could have taken it easier and should not have worried about the money. When I'm alone I start blaming myself."
It is natural for parents to look for reasons to explain their child's blindness. When a painful event occurs, it is human nature to feel that perhaps we could bear the pain better if we would understand why it happened, if we could make sense of something so senseless. When people feel lost, they want a road map, and answers seem to provide the needed map. For some people, medical explanations are helpful; for others, religious beliefs provide comfort; but for the vast majority of parents, there are no satisfying answers that relieve the pain or diminish the feeling that "life is not fair." Most of us have a deep sense of justice and fairness, and it is terribly hard to think that something this tragic can happen without a reason. Some fortunate families who are religious believe that, although they don't understand why, God has a purpose and this helps them cope with their child's disability. Many parents never find a reasonable explanation. People find it hard to think that a catastrophic disability happens randomly or that the world could be so chaotic that who or what a person is, or does, is of no consequence. Most of us grow up believing that justice prevails, that bad things happen to bad people and good things happen to good people. Reconciling this view with one's own life is very difficult for all of us. A physician once said, in helping a family deal with this issue: "Often people think that, because they took drugs in high school or had a teenage abortion, they may be responsible for the child's disability. I reassure my patients that all of us can find fault with ourselves in reviewing our lives. However, I tell parents that their previous behaviors have nothing to do with their child's disability. It is simply a random event, and they were unlucky. I find that my patients are very relieved when I reassure them about these issues."
Most parents do begin to cope quickly and in tandem with grieving. Although parents love their disabled child and make the necessary adjustments, their lives are never the same. The pain comes and goes forever.
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