Mastering Balance Beams: Parenting Children with Muscular Dystrophy

By Joan Fleitas

Have you ever walked on a balance beam? Much like a tight rope, the journey is perilous, with one step cautiously leading the other in an effort to remain stable atop the beam. Despite the winds — despite the narrowness of the beam — despite the distractions from below — the skill can be mastered. With persistence, much support, and an understanding that occasional falls might occur, ‘beam-walkers’ can indeed be successful. Parenting children with muscular dystrophy is much like mastering balance beams.

As parents, we all believe that we should be able to protect our children from harm, socialize them to be exemplary citizens, ensure their perfect health, and craft for them lives where they will surely live ‘happily ever after’. It is as if we perch ourselves on parental thrones when we give them birth. We learn eventually that we are not endowed with such power. When children are diagnosed with muscular dystrophy of any kind, we are given a crash course in humility.

Raising children in the best of circumstances requires that we do a lot of catching up. Just when we think we’ve ‘got it’, when we know how to respond to an infant’s cry, a toddler’s “no”, a pre-schooler’s nightmare, just about then, our children move along to the next stage of development. If we haven’t been there before, it is as if we are sent back to ‘go’ in this game of parenting. Children with muscular dystrophy present us with many more immediate issues, and we find this job of catching up and adapting too often overwhelmingly taxing. Should he continue to go to school when tired? What about experimental treatment for him? How do we help the school system deal with absences and possible learning challenges? How can we avoid neglecting our other children? What do we say to friends? To neighbors and passers-by who wonder what’s wrong with this child who no longer keeps up with his age-mates? Most importantly, how do we give him knowledge of this disease without robbing him of hope?

The world outside our windows has much to do with how we cope with being parents to all of our children. Society expects that we will know how to discipline, how to educate, to nurture, and to respond to needs. We learn from this world of ours what to do when our children are sad, or angry, or sick. Society has a lot to do with how we respond to the news that our children have muscular dystrophy, too. We learn quickly that many people are uncomfortable with the differences these youngsters present. We learn that we cannot always count on our friends, our educational systems, our insurance companies, and our government. We learn that we need to build appropriate support systems in order that our children have the best that we can offer.

Because children are supposed to grow up happy and healthy, when health is not such a sure thing, we are often inadequately prepared for the journey, especially from the vantage point of our balance beams. It is a journey unlike any other, not at all like the linear path of grief outlined by Elizabeth Kubler-Ross, who described predictable stages that mark the way to its resolution. When confronted with a loss, she tells us, we deny, protest, bargain and ultimately adapt to its reality. Not so with the often long-term medical challenges that surround muscular dystrophy.

Because the losses and grief that accompany disease are circular rather than linear, revisiting us over and over again, and because the balance beam is unfamiliar and scary with the winds of uncertainty and stress swirling around us, it is particularly important for us not to attempt to navigate that beam all by ourselves. We wonder, as we balance precariously, just where the experts are, since it often seems like we are the ones being called upon to fill that role. How many of you have been told ‘I’ve never had a patient with muscular dystrophy’, or ‘I’ve never worked with this protocol before. Tell me more about it.’? We wonder, too, where we can find soft shoulders to support us in learning this new skill. Without the compassion and love of family and friends, we will indeed fall off that beam. Remember traveling on an airplane and hearing the safety message to, “”in the case of emergency, put an oxygen mask on yourself before you put one on your child.”? The underlying message there is a good one to remember. Before we can adequately nurture our children with muscular dystrophy, we need to nurture ourselves.

We need courage to walk that beam as we cope with the demands of parenting a child with such an assortment of medical challenges. As parents, we stumble from our thrones when we acknowledge that we can’t always protect our children from pain and disappointment. What we can do, however, is to infuse them with the courage that will help them find their own way through difficult times. To access that courage for ourselves, we need to hang out with courageous people, since courage is one of those qualities of personhood that is contagious. And we need to explore ways of coping that flow naturally from our personalities. There is no one right way to handle difficulty, and cookbook recipes just don’t work when it comes to successful coping. When my youngest daughter was born with Down syndrome and assorted difficulties, a friend suggested that I might want to go into an empty field and scream. Because I had no absolutely no desire to do such a thing, I questioned my own response to the situation. “Could I be doing it wrong?” For my friend, screaming was appropriate. For me, it was not.

One of the reasons that parenting children with muscular dystrophy is so challenging is because it involves a great deal of loss. We are not neophytes in adjusting to loss, however, since it is such a requisite part of life. Milestones, for instance, all involve loss. When our first child is born, we mourn the loss of our freedom and often must deal with the loss of the ‘fantasy child’ we dreamed of having. When children go to school, we mourn the loss of their babyhood and their absolute dependence on us. When we marry, we lose a bit of freedom and gain some responsibility in the process. And as we age, we lose our youthful appearance and to some degree, our ease of functioning. New jobs, marriages, separations and divorces, relocations, all of these life events force us to deal with loss.

There is a domino effect when it comes to loss as it involves parenting children with medical challenges, with one loss precipitating others: the loss of health resulting in a need to take a leave from work that results in a loss of income, and on down the domino trail, so parents who have been in similar situations are frequently in the best position to support us.

Dealing with losses surrounding the chronic illness and disability of our children involves an initial shock and numbness. This protective response prevents meltdown and allows us to eventually gather our forces and begin to cope. Unfortunately, it is during this phase that most support is offered…at a time when we have minimal awareness of it.

Denial is another common and protective response to loss and part of the grieving process that accompanies it. It communicates that we have too much to deal with, and it allows us to limit consideration of the overflow. Denial plays out as our not seeming to care, frequently forgetting what we have been told, and paying little attention to the explanations people seem programmed to supply.

Searching and yearning is another common, and the most difficult, response to loss…the pot boils over. “Why” is the operative word, and the work of grief at this stage is in helping us to adjust to new circumstances, to move us from a point where the grief consumes us to a place where it is only part of us. Though the process is cyclical, its goal is the same, with many parents telling me that through their experience of grief, they were surprised to find meaning, purpose and hope in their lives.

We don’t need pity to help us learn how to balance on that beam. What we do require is information and support. This search for knowledge takes us to other parents, to discussion groups on the Internet, to health care experts, to conferences around the world, and to the children themselves. All of these places and people are sources of information that translate into power when they increase our understanding of the journey of muscular dystrophy. And information allows us to channel our grief in productive ways. There is a great deal of it on my website, Band-Aides and Blackboards, information to help parents and children access the resources they need to cope successfully with the challenges they meet along that balance beam.

Children with muscular dystrophy have told me that:

“I am acutely aware that I am different from other children.” “I know that my parents are sorry I have MD and wish I didn’t have it.” “I try to ignore the problems with my muscles and act just like other kids because I know my parents like it when I do.” “I don’t know any grownups with a disease like mine — it’s hard to know how to act.”

We need to respond to those concerns by recognizing the pain of difference that they reflect. Only then should we give our children the encouragement they crave. To tell them not to ‘talk that way’, or that ‘some children have more problems than you do’, or that ‘God made you very special’ or ‘to stop feeling sorry for yourself’ fosters an attitude of secrecy and shame. If they feel that they don’t have permission to share difficult feelings and experiences with you, they will stuff those feelings inside where they can create much isolation and distress.

To help our children, we also need to ban pity from our words and actions. It is not good for us, and it is not good for them. Instead, we should help them identify their gifts…their strengths…and we should encourage them to use those strengths to help others. When we refuse to overprotect them, we foster their resilience, and in essence, give these precious children of ours lessons on walking those balance beams themselves.

We find ourselves engaged in heart work as we struggle to learn our roles in parenting our children with medical challenges. We need empathy and comfort when the beam is high and the winds up there strong. We need to accept our vulnerability; it is what makes us human, not what makes us weak. We need to share our feelings with those who are good listeners. When we expend our energies staying on the beam, trying not to fall down, our vision becomes myopic, and our problems seem larger than life. A good listener can help us to acquire a lens that views them as more manageable. The Parent Project provides such support, buffering the winds, protecting us from the dangers of walking that beam alone, working with scientists and politicians to promote research, to find effective treatments for this nasty disease.

We know from much research that caring for others is an effective way of coping with our own challenges. Helping others though the Parent Project and other support networks is one way of caring for ourselves, too. If we don’t take the necessary time and devote the necessary energy to do this, we will be ill equipped to help others. Begin today to nurture human moments. Moments, not days. It is the moments that bring us joy. When our children brighten up as we enter the room; when we all sit down to eat and share a laugh, when we tuck them in and give them just one more snuggle before sleep. All of these are human moments to cherish. When we experience them, we own them forever.