Duchenne muscular dystrophy, like any serious long-term illness, affects every aspect of the life of the person who has it. It has almost that great an effect on everyone who lives with, or is otherwise close to, him. Parents of children with DMD find that their child's disease leaves no part of their lives untouched. To some degree or other, it:
- uses up tremendous amounts of energy and time
- produces powerful emotions and disturbing thoughts
- affects their marriage
- deprives other family members of equal attention
- changes social life and relationships
- affects their jobs and careers
- drains financial resources
That's quite a list, and many other items could probably be added. One mother of a boy with DMD says of the disease, "It changes your whole life. It affects everything, every decision, every activity."
Families find that having a child with a disability greatly diminishes spontaneity. Even the simplest activities, like a trip to the supermarket, require more planning and more time. It takes much longer for a disabled child to go to the bathroom, wash his face and hands, get dressed, put money in his pocket and get into the car than it does for kids who are fully mobile. If Mom has to help him, then she can't see to the other kids, let the dog out and make her shopping list at the same time. Family members learn to spend lots of time waiting.
And the situation worsens with time. "It's relentless," the mother mentioned above adds. "it's not that you have a level of disability and adjust to that. He gets worse. We see him changing daily. The demands don't ease up and there's never a break or a day off."
Somehow, in the face of this overwhelming task, families cope. They find the strength, resiliency and resources to do what must be done. Generally, the most successful parents follow a few guiding principles:
- Knowledge is power. They learn everything they can about their son's condition, including choices about medical treatments, day-to-day management and current research findings.
- You can't do it alone. Parents cope by gathering all the knowledge, resources, assistance and support of every kind possible from MDA and other sources.
- No one knows your child as well as you do. Parents become experts on their child's health and personality, so they can be sure he gets the best social, emotional, educational and medical services and support possible. Actually, it's the child who's the expert, and the wise parent observes and learns from him.
- Life goes on. With these elements in place, families find a way to balance the needs of the child with muscular dystrophy with other parts of their lives.
Yes, families cope, but none say it's easy. Most psychologists and other observers who've studied families of children with disabilities and chronic diseases say that attitude, how you view the life you live, can make an immense difference. Robin Simons introduces her book, After the Tears: Parents Talk About Raising a Child With a Disability, with these words:
"In parenting a child with a disability you face a major choice. You can believe that your child's condition is a death blow to everything you've dreamed and worked toward until now. Or you can decide that you will continue to lead the life you'd planned -- and incorporate your child into it. Parents who choose the latter course find they do a tremendous amount of growing. They find inner strengths they didn't know they had. They develop a greater sense of self-esteem. They develop an openness about their feelings and an ability to share those feelings with each other."
Of course, a constantly positive attitude is almost impossible to maintain, especially as you see your child's condition progressing. No matter how constructive you try to be, there may still be moments, and days, of exhaustion, complex emotions and extreme stress. But believing you can create a meaningful life for your child is a good place to start.
The other thing you start with is your love for your child and your commitment to being the parent he needs.
Next... Your Emotions  |
