YOUR EMOTIONS

Being a parent produces for most people the strongest feelings they've ever known. There is incredible joy in having a brand new little person become a central part of your life. There's a powerful desire to give this child everything necessary to keep him safe and happy and prepare him for a fulfilling life. When your child has a serious illness, other strong feelings arise from your grief at realizing that his life will contain an unusual amount of pain and disappointment as well as love and accomplishment.

Most people are familiar with the stages of grief: First, denial or shock at the news that something's wrong; then anger and an effort to find someone to blame. That's usually followed by an attempt to bargain or change behaviors if it will make the problem go away. Then sadness, fear and depression set in. Finally, you accept the situation and learn to live with it as best you can.

Family members learn to incorporate a child's disability into their lives. Emotional acceptance occurs when parents finish mourning the loss of the healthy child they dreamed of and can focus on loving the child they have.

No doubt, you experienced grief when you first learned your son has muscular dystrophy. Finding out that your child isn't healthy, may not live a long time and will become progressively weaker is a profound loss. You grieved when you lost your dream of a healthy, carefree child and other dreams you had for him and your family. You also grieved on his behalf, for the difficulties you fear he'll go through.

You'll likely grieve again each time the disease brings another significant loss: first use of a wheelchair, loss of hand strength, inability to continue in school, tracheostomy or the end of his life.

The stages of grief hit each person in an individual way. Depending on many factors in your upbringing, personality and life experiences, some stages last longer than others, and they don't always occur in the usual order. Your emotions may change from day to day, from minute to minute, and you may return to stages you thought you'd "completed." On top of that, each member of the family is grieving in a different way and at a different pace.

Although grief is painful, each stage has benefits that can help you help your child. The most productive is acceptance; when you're no longer ruled by the other strong emotions you can make wise decisions, seek information and deal more realistically with what the disease means for your child and your family. By the way, acceptance isn't a secure place that you reach and stay in, protected from further pain. It's a goal, a place of strength you strive for all your life. Some days it may seem quite elusive.

Here are some ways that your feelings about your child's muscular dystrophy can either harm or help your family:

Denial

Denial is nature's way of protecting us from great shock. When we first learn painful news, the mind naturally says, no, it isn't true, much the same way the body automatically attempts to resist a physical threat. During denial, you actually feel numb. This gives you time to adjust to the news and prepare for an onslaught of strong, painful feelings.

Denial is harmful when it continues after others are beginning to accept the news. Refusing to believe bad news doesn't make it go away. It only stops you from equipping yourself for the life ahead.

Another harmful form of denial is being absolutely certain that a miracle will occur and the disease will disappear. Also beware of thoughts such as, I can fix it. I just have to try hard enough.

This type of denial can lead parents to try unconventional, far-out therapies despite scientific evidence that they're ineffective. (See "Miracle Cures.") This gives the child and the whole family cruel, false hope and may involve great expense and discomfort.

You need hope and faith, to be sure, balanced with an acknowledgment of reality and acceptance of the truth.

Anger

Learning that your child has muscular dystrophy probably made you very angry: at the doctor who gave you the news, at God, at yourself, your spouse, even your child. When you're angry, you need someone or something to be angry at. Your anger searches for targets before it settles on being angry at the disease itself.

Examine you're anger toward your health-care professionals. Hating them because they represent the disease is unreasonable, of course, and you should move past that. But if they won't answer your questions or give you the attention and information you need, or if they're callous toward your child, your anger is justified. You need to get a better health-care team.

Your anger toward God or fate must be worked out in the context of your religious or spiritual beliefs. Your feelings may also lead you to hate or resent other families who seem healthy, happy and without a care in the world. Both of these types of anger are unproductive. The more energy that goes into feeling sorry for yourself or your son, or being angry about the hand you were dealt, or trying to figure out why it happened to your family -- the less energy you have available for giving your son the care he needs and focusing on your family.

Since DMD is genetic, it isn't unusual for parents -- particularly the mother, who's the genetic carrier -- to be very angry at themselves for "giving this terrible disease" to their son. Of course, no parent deliberately gives her child muscular dystrophy, and many women don't even know that they're carriers. Still, mothers who've passed along a faulty dystrophin gene often feel tremendously guilty, even when they had no idea they were carriers.

You simply have to forgive yourself, or your wife, because this anger is destructive. Get counseling help if this anger doesn't dissipate.

It may seem unthinkable that you could hate or resent your child for having a disease that's in no way his fault, but many parents do have such feelings. If this kind of thought arises, it should pass soon. In very extreme cases, this anger explodes in violence and abuse. Anger at your child can also lead to embarrassment or shame at his differences. Then, you have more shame for feeling that way. Try to find the root of these feelings and confront them through self-examination or counseling, or you'll harm your child.

On the plus side, anger can be very motivating. It's the "fight" part of the fight or flight response to danger; it fills you with energy. Try to harness some of that anger as the energy you need to help your child.

Bargaining

Bargaining is tricky when your child has muscular dystrophy. It's good to focus on positive things as you try to develop a useful perspective on the impact of the disease. But with muscular dystrophy, sometimes the things you're grateful for don't last. Some kids with Duchenne have learning difficulties. All kids with Duchenne lose physical strength and mobility with time. Every day that your son is walking, you're grateful. What happens when he stops walking? You grieve again and perhaps strike a new bargain with the future.

Sometimes guilt leads parents to an unhealthy emotional "bargain." DMD can make parents and other relatives feel several kinds of guilt: He inherited a bad gene from me . . . I'm healthy while he isn't . . . I failed because parents are supposed to keep their children safe.

Or you may have thoughts that you feel guilty for thinking: I'm glad I don't have this disease . . . He embarrasses me . . . I wish he'd die now so we won't have to go through so much trouble.

These thoughts don't make you a bad person. If they arise, they'll probably go away quickly.

Feeling guilty, you may decide you don't deserve to enjoy life, or to smile or laugh or love or have any fun. So you go along with a sour, tragic attitude, or you indulge in self-pity and sadness.

There are two problems with this bargain. One, it doesn't erase your son's disease so it's absolutely worthless. Two, it not only makes you miserable; it has the same effect on all those around you, including your son with muscular dystrophy.

Be realistic about bargaining. You can't bargain for your son's well-being. All you can do is love him and do your best to care for him.

For some parents, facing a child's illness brings home a vital lesson: There are more important things than self-indulgence, pursuit of material goods and temporary pleasures. Realizing that life can be hard is a big step toward maturity, which gives you the strength you need to deal with reality. That, perhaps, is a good bargain.

Sadness

Feeling sad sometimes is inevitable if your child is ill, even dying. You're living every parent's nightmare. You may feel lonely, isolated, exhausted and alienated, sure that no one else can possibly understand what you're going through. Your fear of the future can be paralyzing.

When sadness comes, let it. Grieve and cry. Let your spouse or friends comfort you sometimes, and let your tears come. But do so in a way that doesn't impose your sadness on those who can't handle it, such as your children. Tears diminish and release emotional pain. Some people believe they wash toxins out of the body. Expressing your sadness will lessen it.

Sadness that never lets up could be clinical depression. If you've gone for a week or more with no break in your dark mood, or you can't cry or express your feelings, you may need to seek psychological help.

Acceptance

Acceptance occurs when you give up impossible dreams and set your stronger emotions aside so that you can deal with reality. Simons quotes a parent who said, "Once we let go of the child we wanted, it freed us up to give all that love to Peter!" Some parents get tired of feeling victimized and decide to do something to help themselves -- another step toward acceptance.

Acceptance of your child's muscular dystrophy allows you to take some control over your life and his. It diminishes the power of the sadness, anger or guilt, and returns that power to you.

Using that power and energy to serve your purposes, you can arm yourself with the desire to learn, the will to fight for your child, and the commitment to help your family have a full and meaningful life. Acceptance opens up an emotional space that you can fill with appreciation and love of your child; pleasure and joy in every day that you get to spend with him; pride in your child's accomplishments and enjoyment of his personality; a commitment to do what's best for him; hope for better treatments; and a sense of confidence with which to face challenges. Those strong positive feelings may also be contagious to your spouse, your children, your extended family and friends.

What to Do With Your Feelings

You've been through the stages of grief at least once, and you know what's a healthy emotion and what isn't. Does that mean you're supposed to be upbeat and strong all the time from now on?

Of course not. Emotions arise naturally in response to various events, no matter what your mind tells you. They may come out in frightening dreams or in response to a seemingly innocuous remark from a stranger or a friend. Here are a few tips for dealing with those tough emotions, whenever they occur:

• Always remember they're your feelings, no one else's. As discussed in "Your Child's Emotions," overwhelming your children with your feelings can damage their emotional adjustment. It can also be exhausting and unfair to other adults.
  
  
• Don't pretend you don't feel what you do, and don't be ashamed of disturbing thoughts that pass through your mind. You don't have to act on them.
  
  
• Talk with your spouse, a good friend or someone you trust to understand. MDA support groups or talks with others in the same boat are ideal opportunities to let your guard down.
  
  
• Recognize that, as a caregiver, you're giving a great deal of your life to meeting someone else's needs and often neglecting your own. When feelings of resentment for this demanding role arise, do something for yourself -- whether it's only taking 15 minutes to drink a cup of tea or listen to a favorite piece of music, or taking a few days' vacation.
  
  
• Understand that the demands on you as a caregiver will increase. As your son becomes physically weaker, he'll need more help with daily activities. On days when the responsibilities of caregiving seem overwhelming, try breaking the job into small tasks. Change the sheets without even thinking about what comes next. Take it one day at a time, one hour at a time, one minute at a time.
  
  
• Ask for help. See "Your Support Team" and Chapter 9 for suggestions.
  
  
• Give yourself lots of credit and squelch those self-critical voices. You deserve every pat on the back that comes your way, including those from yourself.
  
  
• Hold onto your sense of humor. Laughing is good for you physically and it helps everyone around feel better.
  
  
• Take solace, strength and renewal from your spiritual beliefs and practices.
  
  
• Recognize burnout. You've reached emotional overload when you no longer feel strong emotions, or you can't summon up the compassion you need. Medical help, counseling or respite care may restore your energy. If not, and you've truly reached the end of your rope, it may be time to look into care options (see Chapter 9).

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