And the kids

Once BT was initially diagnosed the question of what to tell the kids was immediate. Obviously something had to be said since BT would no longer be working and they would definitely notice that. There was a month gap between the first and second opinion where everyone just kept hoping that it was going to be something else and BT was still working. In that gap I consulted our pediatrician who has cared for Bub since he was a newborn. It's one of the few times I've ever seen a doctor visibly upset. I asked him what was appropriate to say.  He recommended a simple explanation but not to include the fact that it is terminal. Bub was 9 and LG was 4 at the time. We told them that Dad was sick now, he wasn't going to get better, and that he wasn't going to work anymore. Their reactions were very accepting. LG went around telling everyone that her dad was sick and wouldn't get any better. Bub was sad and asked more questions. It was a different way of processing fairly appropriate to their ages. As time has gone on, Bub has begun to ask more questions about BT's condition. LG has been more accepting. They both have been big helps to their dad although still expect a lot more out of me somehow. It's been also a sad thing knowing what's to come but there is a lady we know who grew up with a father with ALS and she talks more positively about her experience so I feel like the time BT spends with his kids will be hopefully result in something similar.

One day recently Bub asked me about how long we would live. I talked about the average life span of my grandparents and guessed 30-40 more years for me all things considered, hoping that he would drop the subject of his dad. He did not and I answered with Well it depends on how his ALS progresses and then he asked if the ALS could kill  his dad. I never want to lie to my kids but there is information I don't volunteer unless they ask. So I answered yes but that it all depends on how quickly things go. There is no time limit. These are the moments that I get, that no one else gets and they are sad moments. He took this pretty well and he has been processing, I believe, fairly well. And has been very good to his dad this summer. I hope that this summer and the summers to come where he is home with BT are good, positive memories and that they have quite a few more.