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 10: Saying Good-Bye
In Chapter 10:
photo: wheeling down the road
Preface to Chapter 10 | Medical Decisions | Last Wishes | Hospice  
Legal and Financial Issues | Saying Good-Bye | The Grief Process 
Siblings | Memorials | General MDA Resources 

LAST WISHES

"I was too busy fighting back the demon that was taking my Jim to enjoy all the moments that we could have together. As I look back on the 19 years he was with us, I know how much he taught me about the joys of life."

--Jane Miller, whose son Jim died of DMD

As your son realizes his time is diminishing, he may have a few things he still wants to do in his life -- finishing high school or college, celebrating one more Christmas, attending a family wedding or reunion. Having goals to strive for can help prolong a person's life and energy for a time. The individual's goals will be determined by the things that are important to him.

Sometimes a boy with DMD wants to visit a favorite vacation spot again, go to a place he's never seen, attend a baseball game, meet an admired person or see a particular concert. One young man wanted to turn 21 so he could go into a bar.

Ask your son about his wishes. What-ever his goal, encourage and assure him he can do it, and that it's worth doing. If at all possible, help him make this dream come true. If he's too weak to take a long trip, perhaps you could find a closer place that's similar or have a special evening to review souvenirs or snapshots of the place.

Next... Hospice >