Quest interviewed more than a dozen parents about the effects of their children's neuromuscular diseases on their marriages. Of those couples who were divorced or acknowledged having marital problems, all agreed that it wasn't the disorder that broke them apart. Rather, the experience revealed weaknesses in their relationships that couldn't sustain added stress. If having a child with special needs hadn't brought the marriage down, another crisis probably would have.

Those who've remained together, devoted to each other and sharing child care, attribute that ability to a strong commitment and open communication, often bolstered by religious faith. Some of those couples have discovered new strengths and depths in their relationships.

In between divorce and commitment are couples who compromise. Some who can't achieve ideal agreement stay together under a truce ranging from acceptance to resentment.

All the families interviewed acknowledge that a child's neuromuscular disease is hard on any marriage. Such a child requires more of everything -- more time, money, attention, special activities, doctor visits, problem solving. Those needs inevitably lead to greater emotional, physical and financial stress for the parents.

Each family described here faces those demands in its own way. In every case, the parents' attitude has a distinctive effect on the children's self-concept. For the sake of confidentiality, some names and other details have been changed.

IT'S OVER

Mary and Don are both busy professionals. Before their third child was born, they'd had some problems and considered divorce. Then their daughter, Sara, was found to have spinal muscular atrophy (SMA).

MARY: "I think it was the last straw for me because it put me in an emotional place that I couldn't deal with anything else. With what reserves I had, I couldn't handle the diagnosis and the marriage.

"My view of what happened is that Don just emotionally couldn't handle one more thing and he became really distant and even a little bit abusive. To keep myself together, I needed to get away. We filed for divorce the same day we received her final diagnosis. "Now he sees the kids two weekends a month. I don't know if it's because she's a girl or because of the disability or a combination of things, but he'll do stuff with the boys and not necessarily with Sara. She chews him up for missing doctor's appointments with her. Thank God she's verbal and smart enough that she's going to work it out with him. I think they'll come to some compromise in this relationship.

"Support's been an issue. My family lives at a distance and were very disappointed with the divorce. It's difficult for them to even talk about Sara.

"If I could wave a magic wand, I would love to be married and have a nuclear family. But in the way we deal with things, we still get into arguments and I could never raise my kids seeing all that arguing either."

Rose was recently divorced from Frank after years of disappointment in his failure to become more closely involved with their son, Kevin, who's now 11.

ROSE: "Once you diagnose a child with a disability, it almost makes the responsibility of children and family life 10 times more. You really have to grow up, be the adult for them and be their support.

"Kevin's diagnosis affected my husband's perception of family. When Kevin was first born, Frank kept talking about all these things he was going to do with his son, like take him to the golf course. And then, when he was diagnosed, that all pretty much got shattered and he never really could recover from that.

"It's like I've come out of the grieving process and am moving onward, and he's never really come out of it. I think he's never gotten over the loss.

"Frank and Kevin never do anything together. Frank will watch TV with him but they don't go to the movies or go out and do stuff together. To me, it's not a good father and son relationship.

"If I make the effort to get basketball tickets, they will have a great time, but I'm always the one to make the effort. After a while, it gets tiring and it's like, 'I have enough to worry about; I'm not going to worry about your relationship as well.'

"Kevin feels it very much when he's around other fathers and sees their relationships with their kids. Frank doesn't do anything bad; he's just not there."

While it's more common to hear of fathers who fail to bond emotionally with children with disabilities, there are cases in which the mother leaves the family. Brian and Pam have two kids, a daughter with SMA and a son with no disability.

BRIAN: "When Jennifer was younger, it wasn't that big a deal because she was still walking. But then as it progressed and it got worse, it started putting more of a strain on the marriage because I was working a job where I was away three or four days a week and Pam was having to take care of her during that time.

"She just opted that she didn't want to have to deal with that any more. So she left. I ended up having to take care of my daughter because she thought it would be easier for me lifting her and stuff like that.

"I don't know if she was going through some sort of mid-life crisis and it was just too much stress, or if she wanted to pursue a career. I don't know what she thought. She just left kind of suddenly.

"I think if the marriage had been a little bit more solid to begin with we probably could have handled the stress together. Maybe in a different situation it might bring families closer together, but in my situation it kind of tore us apart. Arguing over who should take care of her and why one parent isn't doing enough, and the other saying they're doing too much or whatever.

"I was running into some financial problems as well. Pam couldn't bring in an extra income that we needed, so that kind of put a stress on our finances. It kind of all conglomerated together."

TRY, TRY AGAIN

For Mary, Rose and Brian, divorce was the best solution to problems made worse by their children's neuromuscular diseases. Other couples who see themselves headed for a breakup are able to solve their problems.

Lisa and Tom have two boys with Duchenne muscular dystrophy (DMD) and two unaffected girls. In earlier years, behavior problems of one of the girls, along with the increasing needs of the older boy, got to them. They've separated several times but are now back together.

LISA: "Having a child with a disability puts pressures on the family. It wears on you. We take it out on each other.

"I'm close to God. I try to pray and that gets me through. I just have to believe that this is our task in life and we have to make the best of it.

"My husband is totally into his boys. He'll read to them, he'll take them out to the house we're building and hook up the TV or the Nintendo. He's really patient with them. He calls them his buddies and they always hug. He's a good dad. He's amazing. He's a rock.

"They're good kids. I think, in the long run, they've improved my life, having compassion and empathy for others. These boys are amazing. They're just special little spirits. They'll grab my hand and kiss it and say, 'Thank you, Mom, I love you.' They write letters telling me I'm the best mom. That makes it all worthwhile."

David Teraberry left his wife, Heidi, and sons, Matt and Ben, after learning that Ben had muscular dystrophy. After several months, he returned to the family. In the ensuing 15 or so years, he's reflected on what was going through his mind at the time.

DAVID: "All I could see was that Ben's problem had become my problem because it was going to interfere with the way I live my life. There was a certain absolute selfishness: This is impinging on my rights and my freedom and I don't like it. At the time, I couldn't have put it in such honest terms."

David found new ways to include Ben in family activities.

DAVID: "We worked very hard to find real activities that Ben could participate in. We liked to hike but Ben can't take long hikes, so we got into four-wheeling. We spent more time in activities like going to the zoo or watching baseball games, rather than playing baseball. He knows more about baseball now than I ever did.

"When I played golf, sometimes Ben would go with me and drive the cart or ride along. We could spend time together and I could explain the game and teach him about things."

Ben Teraberry served as MDA's national goodwill ambassador in 1985 and 1986. Today, at 22, he works in a bank and is married and the father of two.

DAVID: "Ben would not be better off right now if I hadn't been shaken in my boots and come back. He would be a totally different person, and so would I and so would Heidi and Matt."

Three of Anne's and Sam's four children have disabilities; two have a condition involving learning disabilities and their 5-year-old has SMA. Receiving one diagnosis after another was devastating for Anne, but Sam remained more upbeat.

ANNE: "At first, I was very negative and he was very positive. It tended to kind of drive us apart because he couldn't understand me and I couldn't understand him.

"I would doubt my mothering skills and wonder, 'Can I take care of a child like this?' We went to counseling. I needed to hear somebody say, 'You're doing a very good job. Is there anything we can help you with?' I would really encourage people to go to counseling because you need a fresh perspective. Some things in your mind you can't judge when you're so upset. I'm glad we did it because it helped us a lot. I think we're together today because of it."

An additional stress was that their parents didn't approve of their marriage and focused on placing blame, rather than helping with the kids. Anne and Sam made a drastic move -- across the country.

ANNE: "It was the absolutely right thing to do because since we've been out here it's been wonderful. We have had to rely on each other because we're alone now, and yet we don't have the burdens of our families to deal with. I wouldn't encourage everybody to do that because a lot of people have families that help them.

"We sat down and said what is good in our lives and what is bad in our lives and wrote it on paper. When we found out what people helped us and what people didn't help us, we got rid of everything negative in our lives, other than the disabilities. You can't get rid of those, but you can control some things and it's only made it much, much better.

"For a while, I just cut off all emotions and we had a very hard time. When we started talking and comparing, that's when it started getting much better. If we had stayed back East and it continued the way it was going, I think ultimately we would have separated.

"What was best for Sam was to get a job that he loved. His work is very good for him mentally. Then he comes home and takes the kids happily. That allows me to go out to MDA support groups. We do Girl Scouts and all kinds of stuff like that.

"For privacy, Sam and I take advantage of the time when the kids are in bed. That's our together time. I'll have a dinner fixed just for the two of us or we'll just watch TV in the bedroom and have private time and talk. That to me is better than going out to a restaurant with a lot of people around.

"I wish people could know that, if they hang on during the bad times, that you will learn to cope and things will get better. When you're in the midst of a disability and the heartbreak and the medical cost and the emotional cost, people just get so discouraged that they think it can never get better. And it does."

COMPROMISE

Some couples go on together, even when there's some unresolved conflict.

Barbara and Joe haven't seen eye to eye since the day they learned their child had muscular dystrophy. Later Barbara herself was found to have a mild form of muscular dystrophy.

BARBARA: "From her diagnosis on, I thought, now I need to find out what I can do to help her. It's not like my husband didn't want to help her; it was just he had a hard time accepting it. I was trying to read everything and he just didn't want to hear it. I think he thought everything was just going to be fine, that this was something that she was going to get over.

"He's very involved in the educational process, getting services from our school district. But he does not like to talk about his feelings about this or for me to talk about my feelings about this.

"We're pretty much at the point where we don't want to separate. We know how harmful that's going to be for our children. But I'm beginning to question if too much has happened, too much has hurt each of us, that maybe we can't go back to where we were.

"When my health was bad and I was going through the diagnosis process, he thought I was faking it or imagining it. Plus, his work was not going well. I don't feel he understands and supports me at all.

"I think a big part is that he can't fix this. He feels he should be able to fix this for her. And he just can't."

Linda feels that Charles has distanced himself emotionally from the issues involved with their teen-age son's muscular dystrophy.

LINDA: "He's gotten really into his job. He's gone a lot. He doesn't help lift Patrick because he has a hurt back, so that leaves that responsibility to me.

"Sometimes I'm resentful. I don't have a lot of personal life going on because I take care of my kid. I don't think that I'm resentful for that, but I am resentful that I don't get any help.

"Even when he does help he's so ornery about it, it makes Patrick feel bad, so it's just not worth it. Patrick already kind of feels that his dad is disappointed that he has this disease.

"Charles gets really defensive if you try to get him to talk about it. He's a blame person, especially with me. I'm a real good one to blame.

"My parents are just wonderful. My dad is really strong and he helps me with lifting a lot. They are real supportive and my siblings are the same way. I can talk with them.

"They'll stay with the kids so we can go away for a couple of days. It's really helped our marriage to kind of get away from it all. It can bury us, it really can."

Fay Sias of Tucson and her late husband, Nic, found out that their only child, Mark, had Becker muscular dystrophy when he was about 11 years old.

FAY: "My husband just kind of did the man thing of holding it in and trying to process it as analytically and rationally as possible. He did not want to discuss it. He committed himself to providing for Mark financially and withdrew somewhat and left it to me.

"I would bring it up and he would look away and look sad and look for any distraction to move onto something else. I did that on purpose occasionally to let him know that, 'Yes, it's still here, it's still real, it is happening. This family is going through this. You're going to be dragged behind if you can't walk beside us.'

"We were not as close, and I did not have the same sense of trust emotionally.

"I took a look at the situation and I said, 'You know what, this guy does not want to go here. And I can make him miserable by trying to force him to go there or I can respect that he needs not to be heavily involved in this.' I had respected a lot of quirks about him before and this was one more quirk."

Nonetheless, the kind of support her husband was able to provide was appreciated.

"I was very fortunate that I had 10 years of the support of someone that I trusted and loved to help me adjust to this crisis. I don't know how well I would have done if Mark had been diagnosed after my husband died."

TOGETHER WHATEVER

In earlier generations, couples were more likely to stay together no matter what. Aloha Bussey attributes her 47 years with Fred to their concept of marriage. They live near Birmingham, Ala.

ALOHA: "Back when we got married, you take what comes along and you just deal with it. We're married so we're married, and we're in this together."

One of their three children, David, is a 39-year-old survivor of DMD, now using a ventilator. With part-time nursing help, his parents care for him. Over the years, they included David in vacations and other activities, with respite help from their extended family. Their son's muscular dystrophy has in fact enriched their lives.

ALOHA: "You learn patience and you learn that you can handle things that come along in your life. And you learn more of your strengths.

"David has truly been a blessing for us. We've enjoyed him. He never complains, he's always there with a smile. Other people have expressed to us that he has been a blessing to them.

"It has not been easy at all, but we are thankful that we have had him for this long. We take it just one day at a time, and we know we're doing all that we can do. It is stressful and it's very hard, but he's not difficult to take care of. He's easy to please."

Extended family members also are a great help to Zori and Juve Ortega of San Antonio, whose 13-year-old son, Daniel, has Becker muscular dystrophy. They also get valuable support from other families they meet through MDA.

ZORI: "When he was first diagnosed I didn't know anything and the books only tell you so much. I had 10,000 questions and when I went to MDA things, the moms helped me so much with a lot of the school stuff. They informed me of a lot of things that you don't know."

A couple of years ago, Daniel had some behavior problems that were found to be related to his frustrations with having muscular dystrophy. Although his father didn't attend counseling sessions, he approved of the rest of the family's participation.

Juve gives his wife quiet support -- going to some MDA activities, spending time with their daughter when Zori is busy with Daniel, and being an emotional bulwark to her.

ZORI: "I just accept Juve as he is. When things have gotten real, real horrible and he sees that I can't take it, he's been there. But something he thinks I can deal with, he says, 'Well, you deal with it.' Then once he sees I'm falling apart and I can't deal with it, he'll step in and try to at least be supportive. I can't imagine having nobody there to help me with it."

Susan and Jack Hudson of Albuquerque have always been partners in caring for Scott, now 16.

SUSAN: "When Scott was first diagnosed, just before his third birthday, we read everything we could get our hands on. We've always made it a point to participate in MDA functions and be around all the kids younger or older so that Scott can kind of get used to the idea of what's coming up and it's a slow, natural process, rather than a surprise.

"It's nice having a husband around so you can say, 'It's your turn.' During the night, Scott gets up about every two hours to have someone turn him over or to reposition an arm or put a foot someplace else. If I've gotten up at 12:30 and 1:30 and 3 o'clock, by the time the 5 o'clock time rolls around I'm just dead to the world, then Jack wakes up and does it. We find ourselves saying, 'You did one, I'll do the next one.'

"Usually when you get to the point where you're totally exhausted, the other one kind of fills in. You learn to live with a little less sleep than most people. We don't know any other existence."

For the Hudsons, MDA summer camp is a godsend.

"My other son and I go to the water park or play miniature golf or stuff that Scott can't do. We spend a whole week doing everything the other one wants to do. And we sleep all night long.

"What makes it work is communication -- being able to talk about what's bothering us and decide together that that's not important and that the kids are more important. We've done a lot of traveling focusing in on the kids rather than what we would like. Even if Scott didn't have MD, we know that kids are kids for only a short length of time and the reason you have them is to enjoy them, so you focus in on what they want to do. The focus is the family rather than yourself."

Laura and Tim Kavalauskas of Kenosha, Wis., have an adopted son, Budd, 9, who has DMD. They call themselves a "tag team."

LAURA: "Tim is a rock. He changed his whole career. When Budd was diagnosed, Tim used to go two weeks in Puerto Rico, two weeks here, two weeks there. I could not deal with it. It scared the hell out of me. I couldn't do it alone."

TIM: "I switched to a different job that doesn't have the travel. The job I went to would probably have come up down the road anyway. The timing was actually pretty good on it."

LAURA: "The turnaround was the MDA support group. We have two couples that we just bond with. I find myself supporting some people and I never thought I'd do that."

TIM: "She gets him up in the morning and off to school. She's usually home from work before I am. At night, I work with him on therapy, Cub Scouts, homework."

LAURA: "We're used to it. Every once in a while, Tim makes jokes about our sex life. Most of the time, by 9 o'clock we're so tired we blow kisses at each other and wave.

"The key is a real big commitment. I think we have a genuine love for each other."

TIM: "I don't know if it's that much different from any other family, any other relationship. I think generally if they have problems, they'll have problems whether they have a child with a disability or not.

"A close friend of ours has a son with another disability. When I first found out about Budd having muscular dystrophy, he said, 'Yes, your child may only live to be 17 or 20 or 25 or whatever. But the things that you'll do with that child in that amount of time will total more than you'll do with another child in a normal lifetime.'

"With a child like this, you're close, sometimes closer than you want to be. It's not always happy times but it never is in any other thing. So in the amount of time you're together, you enjoy it more. You learn to appreciate."

Carolyn and Glen have a 14-year-old son with DMD and two unaffected children. Caring for Andy has strengthened their marriage in many ways.

CAROLYN: "Glen has been profoundly affected by his firstborn son not being able to follow in his athletic footsteps. He coaches our other kids in soccer. It's very hard for him to see his oldest son not be able to participate.

"But we talk about Andy being a mental athlete, in that he's been able to walk so long; he can still walk at 14. My husband has coped probably every bit as well as I have. Many people tell us that Andy does as well as he does because Glen and I cope so well.

"My husband and I have leaned very hard on each other when it comes to dealing with this thing, rather than looking too far outside. I have a lot of friends that I lean on. My husband leans mostly on me. I think it's a man thing.

"I usually can comfort him if he's in a bad place and vice versa. We never seem to be in the same bad place at the same time for very long.

"Glen and I rely on each other a whole lot more because we have a child with a physical disability. I think our faith in God and our belief in the goodness of life and making the most of every minute is important.

"My husband went on a business trip to Florida a few months after Andy was diagnosed, and when he came back he said, 'We can't waste any more time; we have to live now and so we need to go to Disney World.' That was very uncharacteristic of him. He was always planning for the future and not one to spend lots of money on anything. Within a year we had planned a trip and had just a wonderful time.

"Andy's inspiring to me and my husband because he has so much to cope with and he does so well with it. Instead of it being a vicious circle, it's a wonderful circle to be in. He encourages us and we encourage him. It has made us, I believe, a much more loving family. His brother and sister care much more so, I think, than most siblings their age.

"Sometimes I give in a little bit and sometimes he gives in a little bit if we're sharply in disagreement; we've got to figure out how to handle this because neither one of us wants to do it by ourselves.

"I think Glen and I are just growing closer and closer together the longer we're dealing with this. We'll be married 21 years this year. We have had a lot of years to learn how to live with each other and our children."

For more on male-female communication, see "Aligning Mars and Venus" (below).

ALIGNING MARS AND VENUS

A recurring theme in tales of marital stress triggered by discovery that a child is affected by a neuromuscular disease is the contrast between the father's and the mother's responses to the diagnosis. Many women say their husbands "can't deal with it," and these men either withdraw emotionally or literally leave. Psychologists believe this happens because of differences between the way men and women are trained (or perhaps biologically equipped) to face the strong feelings that arise in a crisis. (Of course, not all couples describe their relationships this way, but it happens often enough to warrant examination.)

David Teraberry

David Teraberry, who separated from his family briefly after his son Ben was diagnosed with MD, has investigated this phenomenon, in part as a member of Promise Keepers, an organization of Christian family men. He sees three major factors in typical male thinking that can contribute to difficulty in coping with a sick child:

• focus on success
• preference for task-oriented activities, rather than verbal or emotional relating
• difficulty in expressing painful emotions

Fay Sias, a counselor in Tucson who leads MDA support groups, agrees that these are significant factors in most men's emotional makeup: "Men want to do something about it. They want to look at the facts and then solve the problem. But muscular dystrophy is a problem that doesn't have a solution. It may make men feel inept, incompetent or very bad in terms of self-concept. And they don't want to talk about it."

Fay Sias

When a man has a disabled child, he may feel that he's failed, Teraberry says, acknowledging that this is an irrational, emotional response. The sense of failure comes in part from how men perceive the role of father.

"A father's supposed to make everything at least satisfactory, if not wonderful," says Sias, whose son Mark, 22, has Becker muscular dystrophy.

A mother, on the other hand, generally needs to let her sadness out by crying or talking, and seeks a comforting place to do that. She may be baffled by her husband's reluctance or inability to verbalize what he's feeling.

"Women don't understand that men can't put those things in words," Teraberry says. "Part of the friction that develops in the marriage is that the husband and the wife don't understand each other's reactions."

Teraberry continues: "For the wife, I think the worst thing that he could do is appear to be distant from the situation, but that's his natural reaction. For the husband, the worst thing she can do is to talk about it all the time when that's the last thing he wants to do."

Teraberry decided to stick with his family, even though he didn't understand all his emotions. "If I had waited to work through the issues, we would still be separated."

The next step was to "begin to reexamine existing beliefs. I made the commitment to sort through and figure out, why do I feel what I feel?" The process can lead a man to redefine success.

When he learned of Ben's diagnosis, "All I could see were the negatives," Teraberry says. On reflection he realized, "The truth is, there isn't any one of us that doesn't have major deficiencies or handicaps."

To get a more realistic perspective on success and failure, Sias suggests doing what Sam and Anne did: making lists.

"Start listing together what the positive and the negative aspects of their situation are. Then, is there anything they can do, anything at all, to move that negative even a little bit closer to a positive thing?" she says.

"This helps men because it's dealing with emotional stuff but it's doing it at an analytical level. That may help the couple bridge the apparent gap in dealing with emotional material that we seem to have as men and women."

After looking at negative beliefs -- My son can't play ball ... I don't know how to talk to my daughter -- a father can make it his task to figure out activities he can do with his child. Rather than playing sports, they can watch sports on TV, attend games, use a computer, build models, read, build collections or study something that interests the child. Some men are gratified by building adaptations to the house, working with the child's school accommodations or helping dress and bathe the child.

Women need to accept that these activities may help the father cope emotionally much more than talking about his feelings would.

One reason men focus on athletics as a way to relate to a son or daughter is, "Men tend to be involved with other people through activities," Teraberry says. "Now all of a sudden I've got a boy that's never going to play ball and ball is important to me. With a handicapped child you need to get involved more in the relational side. OK, let's talk instead. We've just gone from the man's strength to his weakness."

The emotional challenge presented to both parents by a child's serious illness is grief -- the cascade of feelings that follows any significant loss.

Sias says, "We go through it when we hear the diagnosis. We go through it when there is a change in function. The success of the family really depends on how adaptive they are to grief."

If a man feels he can't deal with his grief, his impulse may be to run away from it. Traditional taboos -- real men don't cry ... real mean aren't afraid -- leave him no outlet for his sadness and fear, and he may try to intellectualize the situation. Others bury their feelings, staying with the family but never acknowledging their pain. That can create a bigger gulf between spouses. Others act out their feelings in destructive ways -- drinking, violence, adultery, emotional or verbal abuse.

Men and women can get help in their grief from various sources: church or synagogue, MDA support groups, a trusted friend or relative, community grief counseling programs or psychotherapy.

Sias says, "I don't think because your child's been diagnosed with muscular dystrophy that means you need therapy. I think you're going through grief. And you may work through that on your own, or with your minister or rabbi, or you may want to do some short-term work in counseling."

If other stress factors exist -- unemployment, substance abuse, trouble with other family members, other illnesses -- the diagnosis of a child's disorder will hit the family even harder.

To get through repeated episodes of grief, Sias advises, "Pay attention to the quality of your life every day. Because the better your quality of life is each day the better you're able to handle the downside."

If one partner is having more problems adjusting emotionally, the spouse must be patient. Allow the other partner to be himself and to process his emotions in his own way, both Sias and Teraberry advise. Don't try to make up for it or force him to change. Recognize the things that aren't going to change and decide whether you and your child can live with them or not.

In some cases, a mother may find emotional support elsewhere if her husband isn't providing it -- with friends, other parents of kids with muscular dystrophy or family members.

At some point, fatigue will appear on your list of negatives, and both spouses can benefit from occasional respite care provided by relatives or baby-sitters. The health care service coordinator at your MDA office may be able to suggest solutions or point you to another family or a program that can help.