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Relatives and Friends
A Duchenne diagnosis inevitably affects everyone who is close to the child: parents, grandparents, extended family members, and friends. Keep in mind that reactions will vary, and that ways of coping with such serious news differ from person to person.
For many, anger, shock, and sadness are the prevailing feelings. Sometimes these feelings are directed at the doctor who gave the diagnosis; sometimes parents blame themselves for passing on the mutated gene that causes Duchenne; sadly, one parent may blame the other. Often people blame God.
It will take time for families to come to terms with the diagnosis. Knowing that they have a solid support system in place, to help them face fears with courage and optimism, can often reduce the anxiety and stress associated with these feelings.
Communication is key
As a relative or friend, you can help make sure parents are talking to each other, and that healthy siblings are still getting some one-on-one time and special attention. Remember, too, in the midst of helping, to make sure that you are finding the support that you need to deal with your sadness and frustration.
If you are not a member of the immediate family, it may be difficult to find the right balance between offering support and respecting their privacy. Don’t let this discourage you from offering what you can. You have a unique opportunity to really help your relatives and friends during a period of major adjustment, and to establish, as much as possible, a sense of normalcy within the family. That’s one of the things that boys with Duchenne want more than anything else — to feel normal.
We also recommend that you read two extremely insightful articles, Mastering Balance Beams and When Jack Fell Down...Jill Came Tumbling After, by nurse and mother, Joan Fleitas Ed.D., R.N., about the balancing act parents face with each other and in trying to hold their family together.
Article: Mastering Balance Beams