Hi, This is what Hospice does best.. they will help people come to terms with there illness.. They will help open the conversation with all family members.. We do what you are doing as well.. mask things with laughter.. although a couple of weeks ago Mom and I had a conversation about death and accepting the fact.. it brought things to a new level.. it is comforting in a way..There are also some good books that can help.. Death and dying is a very good one.. Love D

We've known Allison's prognosis since she was 16 months old. I was told she would never be 10 and she is now 22. However, that does not mean her incurable (also neuromuscular) disease has gone away. We, too, use laughter. Let me ask you this: do you feel HE needs to talk about it? With Allison, over the years as she has gotten older and matured, I think she just came to her own understanding of her prognosis. We have the attitude at our house that we are all dying, and none of us really knows when. I guess what I'm trying to say is that perhaps your son understands his mortality more than you think he does, even if he doesn't verbalize it. Maybe he gets upset when you try to talk about it because he's making his own peace with it and is not ready to talk about it just yet. Does he have friends with Duchenne? If he does, then trust me, he knows. Here is the US, the Muscular Dystrophy Association sponsors camps every summer where the kids can go for a week and "be like everyone else". Do you have those there? or anything similar. It would be a great place for him to voice his fears and ask questions. We also have to remember that our children know how their diagnosis has also changed OUR lives and I think that they try to protect us from more stress and pain when they can. Maybe he's trying to make it easier on you. I just think that when he's ready to talk to you about it, he will. Until then, I would just take it one day at a time and keep the laughter going.
Big Hugs...
Donna

Dear Jo, I am a Mother of a Christopher, who has a very serious heart condition. The only treatment is a heart transplant. His heart is at the stage where the doctor's had said it was time to draw the bloods. Chris says he doesn't want to talk about it(heart transplant). He has said just let him go. He is angry, depressed, and acts like I am the reason he has this condition. He actually got a virus that destroyed his heart muscle. I have begged him to take his meds, keep his appointments, eat right. He does none of these things. He recently moved out because he said I remind him of how sick he is. He is trying to run away from his illness. Maybe your son's refusal to talk seriously about the end, is fear. Maybe he can't stand to see the pain in your face. Be glad you have humor. Maybe there will never be "the right time to talk about it". Allow him to avoid it if he chooses to. In the end, just do the best you can and not second guess your decisions. He trusts you. Don't have him spend his last times stressed by somthing he has chosen not to do. Keep up the laughter for his sake. I would do anything to share a laugh with my son. God will see you through. Peace and prayers to both of you.

I am very humbled by the answers from you mothers.. I have never dealt with loosing a child.. I think or know it would be alot diffrent.. If it were my child.. it sounds good to say call Hospice and they can help.. but nothing would help me to deal with that.. I hope all your children have many more healthy days, on earth Love D

Wise words and thankyou for taking the time out to give me this sound advice, i suppose i knew what i should do but needed some support in my decision and thas what you have given me, thankyou. My son is a rown man and i am certain he knows and understands the severity of his disease i will let the chips fall where they may and try my upmost to enjoy the time we have left, you are all wonderful people and i thank you again Love Jo