Khristina,
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana
Here is my take on it.
When Courtney was diagnosed I did all the research I could on it. I sat Courtney down and this is what I said.
You have a disease that will probably shorten your life. It is a progressive disease and as time goes on it will get worse. By taking your medications and doing everything the doc tells you to, you have more of a chance of staying healthy longer.
THIS DOES NOT MEAN YOU CAN NOT LIVE A FULL, WONDERFUL LIFE! No one has the guarentee of being here on earth for 80, 90, or 100 years. You have to live life to the fullest. Find out what your dreams are, AND DO WHATEVER YOU HAVE TO TO ACHIEVE THEM!! Don't let anyone stand in your way! Eat good food, dance all night, find true love, read a good book, smell the flowers, just relax and have fun!
Now.....I am not one to shy away from talking about death. It does not bother me at all. I have had many conversations with Allie about Ry's last weeks. I am so grateful to Allie for sharing those memories with me, and I hope when it is Courtney's time to go she will have all the people she loves right by her side, and they make it as comfortable as possible for her.
Do Courtney and I realize she can/will die from this disease....YES
Do we dwell on it everyday.......NO
Do we discuss it when she or I want to.......YES
Do understand what will happen to her when the disease progresses.....YES
Do we dwell on it all the time.....NO NO NO
Does it scare the hell out of me that I might lose my child to this disease? HELL YES! Sometimes when I think about it I can hardly catch my breath, but I would rather discuss it and know what is to come than not know and be completely caught off guard!
Seana