CoachMeg
Distinguished member
- Joined
- Mar 4, 2011
- Messages
- 209
- Reason
- Loved one DX
- Diagnosis
- 02/2011
- Country
- US
- State
- CA
- City
- Roseville
Good morning all! I am here to ask for a little help, advice, or just a little encouragement as we debate talking with our children about ALS.
Our kids are 10 and 6. My son is the oldest and a very concrete thinker, everything to him is either black or white. My daughter is the opposite and very intuitive. We think that Ryan knows more about what is going on with hubby than he is letting on. I think part of him knows that things are serious, but he doesn't want to ask any more questions than necessary.
I should back up. On the advice of therapists, we have told the children only that Daddy has a disease that is causing his muscles to get weaker. We firmly believe that at the time of diagnosis, this was the right thing to do. Now, as he is in a chair most of the time, slurring his words, not able to do those things that he has always done, we may be doing the kids a disservice by not telling them more. We fear that this could be the last holidays we share together as a family.
This Friday, my husband has another doctor's appointment. The kids know that I am taking time off of work to take him. Of course, my husband isn't excited to go, and I totally understand that. I am not exactly excited, but look forward to picking the brain of his neurologist so that I can do what is necessary to take the best care of him. Our thoughts are that this weekend, would be a good time to tell the kids. They have all of next week off and will be surrounded by family. It will give them lots of time to digest the information and ask questions of all of us.
One other key reason why we haven't told them before, is that my father in law passed away from ALS. The kids, especially Ryan, know that. We didn't want to tell them at first diagnosis because we knew that Ryan would automatically conclude Dad was dying. Now that he is older, although only a year, we think he is better able to process it. They never knew their Grandfather, but we have spoken about him and the dreaded illness that took him.
I don't want you to think we aren't worried about Zoe, we are. But she has a special light about her. She believes in angels and fairies, and tells us when Wrigley, our first Great Dane who passed away 4 years ago, shows up to play with her in her dreams. She has dealt with death much differently than Ryan has and I think she will be a great comfort to her brother. Ryan has a tough time with the idea of spirits and believing in heaven.
I feel better just writing this out. I have read the information that sadiemae posted from the ALS organization in Canada. Definitely good stuff. But if you have any words of wisdom, I would appreciate your insight.
As always, thank you to all.
Love and light
Meg
Our kids are 10 and 6. My son is the oldest and a very concrete thinker, everything to him is either black or white. My daughter is the opposite and very intuitive. We think that Ryan knows more about what is going on with hubby than he is letting on. I think part of him knows that things are serious, but he doesn't want to ask any more questions than necessary.
I should back up. On the advice of therapists, we have told the children only that Daddy has a disease that is causing his muscles to get weaker. We firmly believe that at the time of diagnosis, this was the right thing to do. Now, as he is in a chair most of the time, slurring his words, not able to do those things that he has always done, we may be doing the kids a disservice by not telling them more. We fear that this could be the last holidays we share together as a family.
This Friday, my husband has another doctor's appointment. The kids know that I am taking time off of work to take him. Of course, my husband isn't excited to go, and I totally understand that. I am not exactly excited, but look forward to picking the brain of his neurologist so that I can do what is necessary to take the best care of him. Our thoughts are that this weekend, would be a good time to tell the kids. They have all of next week off and will be surrounded by family. It will give them lots of time to digest the information and ask questions of all of us.
One other key reason why we haven't told them before, is that my father in law passed away from ALS. The kids, especially Ryan, know that. We didn't want to tell them at first diagnosis because we knew that Ryan would automatically conclude Dad was dying. Now that he is older, although only a year, we think he is better able to process it. They never knew their Grandfather, but we have spoken about him and the dreaded illness that took him.
I don't want you to think we aren't worried about Zoe, we are. But she has a special light about her. She believes in angels and fairies, and tells us when Wrigley, our first Great Dane who passed away 4 years ago, shows up to play with her in her dreams. She has dealt with death much differently than Ryan has and I think she will be a great comfort to her brother. Ryan has a tough time with the idea of spirits and believing in heaven.
I feel better just writing this out. I have read the information that sadiemae posted from the ALS organization in Canada. Definitely good stuff. But if you have any words of wisdom, I would appreciate your insight.
As always, thank you to all.
Love and light
Meg