This week there was a very informative and emotional segment on a news program we frequently watch at our house. The program detailed the steps in leading patients through decisions on what types of interventions they do or do not want. For those who have made the decision not to continue with treatment when their disease is at a stage where treatment is of no benefit, an Advance Directive is a gift to families.
Eleven years ago, I sat with my parents as they went through the same type of conversation. It was heart-wrenching then; an odd mix of triumph and resignation. Kenny and I watched the same type of conversation unfold on our television set this week. Of course, we had an emotional discussion ourselves after viewing the segment. We will some day - sooner rather than later - have to have this same kind of conversation, but it will be about our son's wishes, and what we think will be best for him.
Our son is past the point where he can understand this disease and its consequences. But we do know that he asks for relief from pain when he needs it, and that he can let us or his caregivers know when he is in distress. A couple of months ago, Lacy had a fever - due to sinus infection - and was so weakened that he could not walk to the car. He had to use a wheelchair. Even the slightest illness knocks him to his knees. If he developed something more serious, like pneumonia (common in HD), who knows what would happen?
We talk in generalities and nebulous "what ifs". Years from now, how will we know when to say "enough?" We trust that God will give us wisdom and courage on that day.
One Advance Directive that Lacy has given us is this: His fondest wish always has been to see Jesus face to face. He had a dream once in which his body was covered with hurts and "Jesus touched all my hurts and made them well."
When we reach the place in which no treatment will benefit him, no intervention will save his life; when heroic measures would increase suffering and not ease it, why would we deny Lacy the one thing he has always wanted? To know what he wants without question - that is a gift.