Guide to Other Chapters:  
Table of Contents
Introduction
1: What Is Duchenne MD?
2: Getting the Diagnosis
3: Sorting Out The White Coats
4: Your Child's Physical Needs
5: The Future—Research Points the Way
6: Your Child's Emotional Needs
7: Your Child's Education and Future
8: The Family
9: When You Need Help
10: Saying Good-Bye

General MDA Resources >
 
Chapter 8: The Family
In Chapter 8:
photo: family walking in the zoo
Preface to Chapter 8 | Your Emotions | Your Marriage | Your Other Children | Family Life, Part 1 
Family Life, Part 2 | Your Extended Family and Community, Part 1 |
Your Extended Family and Community, Part 2 | MDA HELPS: Support Groups 
Caring for the Caregiver | Opportunity for Growth 
Resources for this chapter | General MDA Resources 

OPPORTUNITY FOR GROWTH

Having a child with muscular dystrophy is certainly difficult and sometimes painful.

But once you understand and accept your child's situation and its impact on the family, good things do happen. If you determine to have a rich and rewarding family life that happens to include a child with a disability, you can. Parents in your situation have found that the experience has enriched their lives in many ways:

  • They've learned a great deal of practical, factual and medical information.

  • They've learned to focus on what matters. The experience has added depth and perspective to their lives.

  • Dealing with the disease has drawn family members closer together.

  • Their faith in God has proved a vital bulwark.

  • Family members have developed greater empathy, patience and tolerance for others.

  • They've been able to turn obstacles and crises into opportunities to learn and use problem-solving skills.

  • No matter what the future holds, they feel blessed to have this particular child, who's brought love and joy to their lives.

  • They've faced the worst and found they can deal with it. They're stronger as a result.

  • Their children are growing up in a time when people with disabilities are highly visible and increasingly recognized for their abilities and talents.

  • They've met and grown close to people they wouldn't have otherwise known, such as other families whose children have neuromuscular diseases.

  • They've made this journey knowing that MDA is there to help with every aspect of it.

  • Their sons benefit from much better care techniques and life-extending therapies than were ever available before.

  • MDA research is developing rapidly with cures on the horizon.

One mother notes, "My son has given me more than I could ever give him, in terms of my growth."

A crisis such as having a child with a chronic illness can produce growth in character and spiritual depth. Harry Cole, who has cared for his wife since she had a stroke in 1986, writes in Helpmates: Support in Times of Critical Illness: "Caring for someone whose personal well-being may totally depend on us presents us with a singular opportunity to discover our capacity for loving another person while learning about our strengths and weaknesses and the values that shape our lives. It is a time for intense, albeit painful, self-encounter and growth . . . which, as I believe from my own experience, is the only time when real growth occurs."

Next... CHAPTER 9: When You Need Help >