A grief only some can understand

“Parents generate core level dreams for their children even before the child is born. Disability shatters those dreams. Grieving is the process whereby parents separate from those shattered dreams and begin creating new dreams.”—Dr. Ken Moses

“The feeling of isolation at the time of diagnosis is almost universal among parents.”—Patricia McGill Smith, You Are Not Alone.

The grieving process you may experience when your child is diagnosed is different from the grief you feel when someone close to you dies:

  • It’s an unlearned and automatic process. No one has to tell you to “feel.” You feel the way you do no matter what anyone else says
  • It must be shared with a significant other. The more couples can communicate at difficult times like these, the greater their collective strength
  • Grieving is not always accepted by our society or sometimes even by the grieving person. Sometimes tears make people uncomfortable
  • Grieving brings out the “feeling states” of denial, anxiety, fear, guilt, depression and/or anger

Dr. Ken Moses, quoted above, categorized into stages the kind of grief felt by parents of children who have a disability. Let’s look at how to recognize each of the stages, as well as ways to cope with them.

 

Fear

Recognizing it—Fear brings out the issue of fight or flight. The flight takes you into denial and the fight gives you the energy to reattach and generate new dreams.

We fear the unknown more than we fear the known. Having the complete diagnosis and some knowledge of the child’s future prospects can be easier than uncertainty. In either case, however, fear of the future is a common emotion. You may ask yourself questions like, “Will he ever learn?” “Will he go to college?” “Will he or she have the capability of loving and living and laughing?”

Coping with it—Fears of the future can immobilize you. Living with the reality of the day at hand is more manageable if you throw out the “what-ifs” and the “then-whats” of the future. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on. Get through each day, one step at a time.

Guilt

Recognizing it—Guilt and concern often come in the form of questions about whether you, the parents, caused the problem: “Did I do something to cause this?” “Am I being punished for something I have done?” “Did I take care of myself when I was pregnant?” “Did my wife take good enough care of herself when she was pregnant?” A lot of self-criticism and remorse comes from questioning the causes of the disability. “Why me?” or “Why my child?”

Coping with it—Talk about the guilt feelings and don’t be afraid to confront your beliefs about what caused your child to have a disability. Recognize that your beliefs have no effect on what happened in the past, or what may happen in the future. You may come to realize that your actions were not the cause of your child’s disability and this will help you move forward.

Depression and anxiety

Recognizing depression—Depression can make you question whether you are a competent, capable, valuable, and strong person. It is a part of the grieving process. The feeling of sadness and isolation at the time of diagnosis is almost universal among parents.

Coping with depression and anxiety—It can help to know that what you are feeling has been experienced by many, many others. You are not abnormal, and you are not “broken.” You can start to calm your depression and anxiety through the support of other parents who know what you are going through.

Understanding and constructive help are available to you and your child, and you are not alone. Organizations like Texas Parent to Parent can match you with another parent to talk with about your child, your worries and fears. Parents report feeling less depressed and anxious after talking with someone who has had a similar experience.

 

Denial and anger

Recognizing denial and anger—On learning that their child may have a disability, most parents react with denial. “This cannot be happening to me, to my child, to our family.” Denial rapidly merges with anger, which may be directed toward the medical personnel who give you the information about your child’s problem. Anger can also hurt communication between partners or with grandparents and extended family members. Early on, anger may be very intense because it is triggered by the feelings of grief and terrible loss.

Coping with denial and anger—Feelings of denial and anger are inevitable and to be expected when you realize that you must revise the hopes and dreams you had for your child. Recognizing your denial and anger is a valuable first step in learning how to let go of them. You may need outside help to do this. If getting support from other parents is not enough, consider talking to a professional.

It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative.

Laura J. Warren of Texas Parent to Parent adapted portions of this article from “Relating to Parents of the Disabled,” by Dr. Ken Moses. Sherry Santa adapted other portions of this article from You Are Not Alone, by Patricia McGill Smith.