YOUR MARRIAGE

Having a child with a serious illness is one of the most stressful things that can happen to a marriage. It changes the expectations and dreams you had about your life as a couple and a family. It tests the character of each spouse, sometimes with surprising results. It brings different priorities into the home. It puts two people through complicated emotions, not always at the same time.

When a marriage dissolves after a child is found to have a serious illness, it doesn't mean the child's disease destroyed the marriage. Most observers believe a serious crisis measures a marriage. In other words, if a couple's emotional commitment and maturity are weak to begin with, any serious problem can destroy the marriage. On the other hand, many couples have discovered that facing their child's muscular dystrophy together made their marriage stronger.

Emotional Styles

Each individual has a different way of experiencing and expressing the emotions produced by a child's disease. Some of those differences come from the variations in the ways men and women perceive the experience and respond to it.

Women are more typically raised to be caregivers, accommodate others' needs and express their feelings. Men may feel less comfortable giving care and expressing empathy, and more focused on activity -- doing something to fix a problem. If spouses don't understand these differences in emotional style, they may grow to resent each other, leading to more emotional stress.

This is a typical scenario: A mother reaches a certain level of acceptance of her son's disease. She throws herself into his care. She learns about the disease, organizes her life around his needs, fills her days with her son's exercises and trips to the doctor, the therapist, the school, the support group, etc.

The father gladly leaves the day-to-day coping to his wife. He decides to be strong and provide for his family. He also welcomes going to work and working long hours as an escape from child care or painful feelings.

The wife feels neglected and overburdened and gets angry at her husband for spending less time at home, not helping with the child and not showing his feelings. The husband feels rejected, left out, jealous of the attention his son is getting, unappreciated and uncertain how to help his wife.

Other dangers in this emotional mine field might include:

• A father remains angry at his wife for "giving" their son a faulty dystrophin gene.
  
  
• A mother gets sympathy from friends and family, but no one expresses the same comfort to the father.
  
  
• One spouse quits work to spend more time with the child, giving the other spouse a greater financial burden and diminishing family income.
  
  
• One partner needs the comfort and reassurance of lovemaking, while the other is too fatigued to want sex.
  
  
• A father doesn't know how to relate to a son who doesn't excel at athletics or isn't likely to take over the family business. He isn't sure how to teach this boy what it means to be a man.
  
  
• One or both parents come to see themselves as martyrs to their child's disease.
  
  
• A mother gives her son all the emotional passion she once shared with her husband.
  
  
• One or both parents, and their other children, feel the child's disability prevents them from enjoying travel or recreation.
  
  
• All family members are convinced that muscular dystrophy is ruling their lives.

Creating New Expectations

Of course, an individual's emotional style may have nothing to do with gender. At any rate, emotional stresses of this sort need to be dealt with because they won't go away by themselves.

The most important thing parents can do to help their marriage survive this crisis is to communicate openly about the child's muscular dystrophy and everything else. Not communicating allows resentments to build and may create a gulf between you that will become too large to bridge.

This is a time for solving problems together, sharing feelings and strengthening your sense of partnership. The two of you need to find creative ways to meet the family's needs. You may be able to change the way you do some things or not. In either case, you both need to understand and agree on your roles, goals and approach to making the disease a part of your family's life. Then support each other's efforts verbally and emotionally.

For instance, at a certain time of the week, one of you could be responsible for the child with muscular dystrophy, while the other devotes attention to other children and household concerns. Finding concrete solutions to day-to-day dilemmas will help keep larger conflicts from growing and festering.

Having a child with a disability can put one or both parents' careers on the slow track. Some parents compromise by taking less demanding jobs or choosing not to seek promotions or travel. Some find jobs with more flexible hours, or part-time or job-sharing options, even if it means less pay. Some parents are able to persuade employers to let them work from home full or part time. Once the two of you talk about your choices and decide what to do about work, let go of regrets and resentments and do what you need to do.

The Americans with Disabilities Act protects parents of children with disabilities from discrimination in hiring and firing. Though the ADA doesn't require that an employer accommodate your child's needs in your work schedule, the Family and Medical Leave Act does offer some protections in this area. (see "Family and Medical Leave.")

Caring for a child with a chronic illness has actually opened up career opportunities for some parents. Volunteering at a disability-related organization has led some people to paying jobs or qualified them to become consultants to other parents. Your experience may awaken a new career interest, or develop skills you can use at work: problem-solving abilities, patience, creativity, time management, computer use, public speaking or conducting research.

In the areas of sexual and emotional intimacy, it's important for a couple to have time alone together in any marriage, but especially when family life has the added stress of a child with a neuromuscular disease. Schedule some time, whether it's an evening every couple of weeks, or a yearly vacation, when you can be free of other family responsibilities. Some couples set aside a small amount of money to use just to treat themselves.

Don't wait for the time to arrive; it won't. You have to schedule and plan for it. Giving yourselves uninterrupted time to have dinner, enjoy a bicycle ride or make love can be one of the most important things you do to keep your marriage strong and replenish your energy.

If a parent has problems expressing emotions about his son's illness, a parents' support group can often be a safe place to let feelings show. Fighting tears or trying to remain in control won't work forever. There's nothing "unmanly" about a father showing pain when his child is in trouble.

Single Parents

A single parent of a child with DMD doesn't have the support of a committed, daily partner to share concerns and decisions. Like any single parent, you somehow become both mother and father -- a task that frequently depletes your physical and emotional resources.

A strong support system (see "MDA Helps: Support Groups") is all the more important, as is spending time with other adults. It's easy for a single parent and an only child with a disability to become a world unto themselves. That's not necessarily healthy for either of you. The more full and varied your world is, the better the options and more complete the life you can offer your son.

Next... Your Other Children