"Where have you gone, my little one, my little one?
Where have you gone, my child, my own?
I know you're with God, and I know that you're free.
But I know a part of you will always be with me."
--Jan Clark, whose son Tim died of muscular dystrophy
In all likelihood, your son will be a young man by the time his DMD becomes fatal. Eventually his respiratory system and his heart will be severely weakened by the disease. Then you'll begin to face the fact that he doesn't have much time left.
As has happened at other crisis points in the disease, each member of the family will deal with the impending death in an individual way and on his own timetable.
Some young men in the later stages of DMD welcome the end of their struggle, while others insist on every last medical intervention that might give them a few more days or hours of life. Some are obsessed with the physical details of their experience; others crack jokes at every opportunity; and others want to verbalize their feelings about their lives and deaths. Your son's attitudes may change from day to day as he struggles to deal with the meaning of his experience.
It's not uncommon for young men in this situation to try to protect their parents by hiding their fears, downplaying their symptoms or seeming to be nonchalant about death. If you suspect your son is doing this, let him know that you're there to go through the next stage with him, whatever it brings.
In some families, weary parents are psychologically ready for the end long before their sons are; in other families, the opposite is true. Either feeling is "normal," and should be no cause for guilt as long as it doesn't keep you from helping your family.
One or both of you may experience a new wave of denial, believing that some divine miracle or new medical procedure will prevent the inevitable. In this situation, an expression of denial is simply a wish that things were different. Eventually, when able and ready to do so, the person in denial will move out of this stage.
The agonizing realization that your child will die before you do, a terrible violation of the natural order, may feel unbearable, even though you've known for many years this time would come. Awareness over time helps prepare you in some ways, but it doesn't erase the pain of your ultimate loss.
During this time, it helps if all family members can be gentle with each other's feelings. Comfort those in pain; take some of the load from those who are frazzled and dazed. Don't hold back the tears -- or the laughter and smiles. A lifetime of open communication will help all of you talk about the things that matter in the time available. Your best sources of strength are your spiritual supports and your love for each other.
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