THE GRIEF PROCESS

"When I do die, I don't want you guys to miss me so much that you'll ruin your lives. . .. I want you to go on and be happy. Just try to have happy memories of me."

--15-year-old with cystic fibrosis

When you learned your son had muscular dystrophy, you probably went through a grieving process. (see "Your Emotions.") At various times of crisis during his disease, you again experienced some part of that process. At his death, the process may begin again, perhaps more powerfully than ever before.

One observer says, "Grief is the price we pay for love."

Most psychologists think that having some warning of a major loss allows you to begin grieving in advance and helps diminish the pain. This is called anticipatory grief. But what's more important to understand is that there's no set way to grieve or time to spend feeling the emotions that come with the death of your son.

Reaching acceptance takes as long as it takes. Even if your son is an adult, even if you thought you were prepared, losing him will be painful. Don't judge your feelings. Sometimes the deepest bereavement, sadness and depression don't occur until several months after the death.

Loss of a child, no matter how it comes about or how old the child is, is a primary loss, one that affects you in many ways for a long time. It's perhaps the most painful of all the losses life can bring. People who lose a child through stillbirth or miscarriage feel tremendous grief. Your grief is different in kind from this and from the type of grief someone feels when an elderly loved one dies, and different from the experience of a parent whose child dies unexpectedly or violently. Not easier or harder, not stronger or weaker, just different. It's yours.

One father quoted in a newspaper article said that a parent actually never recovers from the loss of a child.

"'You can put it beside you,' he says, 'but never behind you, never out of mind.' The despair diminishes over time, he says, but the event still retains a singular immediacy. Asked when his boy died, (he) once blurted out, 'Twenty years ago -- and yesterday.'" (Detroit News)

The Compassionate Friends, an organization of parents whose children have died, has a brochure titled "Understanding Grief: When a Child Dies." Many of the insights it contains may be helpful to you:

• Grief, with its many ups and downs, lasts far longer than society in general recognizes. Be patient with yourself.
  
  
• Each person's grief is individual. You and your spouse will experience it and cope with it differently.
  
  
• Crying is an acceptable and healthy expression of grief and releases built-up tension for mothers, fathers, brothers and sisters. Cry freely as you feel the need.
  
  
• Physical reactions to the death of a child may include loss of appetite or overeating, sleeplessness, and sexual difficulties.
  
  
• Parents may find that they have very little energy and can't concentrate. A balanced diet, rest, and moderate exercise are especially important for the whole family at this time.
  
  
• Avoid the use of drugs and alcohol. Medication should be taken sparingly and only under the supervision of your physician. Many substances are addictive and can lead to a chemical dependence. In addition, they may stop or delay the necessary grieving process.
  
  
• Friends and relatives may be uncomfortable around you. They want to ease your pain but don't know how. Take the initiative and help them learn how to be supportive to you. Talk about your child so they know this is appropriate.
  
  
• Whenever possible, put off major decisions (changing residence, changing job, etc.) for at least a year.
  
  
• Avoid making hasty decisions about your child's belongings. Don't allow others to take over or to rush you. You can do it little by little whenever you feel ready.
  
  
• Parents may feel they have nothing to live for and may think about a release from this intense pain. Be assured that many parents feel this way but that a sense of purpose and meaning does return. The pain does lessen.
  
  
• Holidays and the anniversaries of your child's birth and death can be stressful times. Consider the feelings of the entire family in planning how to spend the day. Allow time and space for your own emotional needs.
  
  
• A child's death often causes a parent to challenge and examine his faith or philosophy of life. Don't be disturbed if you are questioning old beliefs. Talk about it. For many, faith offers help to accept the unacceptable.
  
  
• It helps to become involved with a group of parents having similar experiences; sharing eases loneliness and promotes the expression of your grief in an atmosphere of acceptance and understanding.
  
  
• Bereaved parents and their families can find healing and hope for the future as they reorganize their lives in a positive way.
  
  

Some confusing things may arise while you're trying to adjust to your new life.

Acquaintances and friends may say things that seem incredibly insensitive: He's in a better place . . . It was God's will . . . At least it's over . . . Just try to take your mind off of it . . . You'll feel better in a few weeks.

These platitudes don't offer any comfort and may make you angry. Understand that these folks are just trying to help and don't know how. Don't try to please them. It won't help you to hide your grief behind false comfort. If you can't stand being around someone right now, you don't have to. Don't worry about offending them or explaining. This is the time to do what you need.

Real support comes from people who let you cry and express your pain in your own way. Sometimes you just need to talk, even if you're repeating yourself or not making much sense. Sometimes you can't talk. Seek the company of those who let you be yourself, not those who try to "fix" you.

In addition to the more familiar emotions of grief, you may feel a sense of relief that the demands of caring for your child with muscular dystrophy are at last over. Don't feel guilty if this thought crosses your mind. You're only human. This is a reasonable, perhaps instinctual, response to a vast shift in your responsibilities. It doesn't mean you're "glad" your son is gone. Just acknowledge this emotion as one of many that you're experiencing now.

Indeed, your role as a parent will change. And those changes can present an enormous challenge for the family. For many years, your son's needs have affected every part of your lives. It'll take some time to adjust and redefine your relationships, your primary duties, how to fill your time.

Next... Siblings