Stephie, my husband was just diagnosed this year, February 20th to be exact. We have 2 children, 17 and 13. They are actually Jim's step-children, but has been the only father either of them have known. As a family we are all adjusting to each change each day. We have had a lot thrown at us, as any family with ALS does. I have to say, my kids are being real troopers about it though. We have sold a lot of our toys, and are down sizing our house, for a cheaper/smaller single story. The kids have been so great about not showing any sign of resentment towards my husband about that, in fact, I don't think they feel any. Teenagers can be quite self centered, so I had kind of thought that might come up,but so far so good. My husband has been progressing rapdily also, in just a few short months he has lost the ability to work, his speech is not very understandable any more.. you know the drill. We have 2 choices in each new loss, accept what is and work around it, try to measure God's grace in our lives as best we can, or fight and cry and lie in self pity. I would be a liar if I told you that I didn't have self pity, that I can't stand the idea of losing my husband to this dreadful disease, but each day I get better at living more in the moment, being content with what we do have, without dwelling on the next thing (meaning his functional status, not literally material things) that we might lose. I go nuts when I am in that place, that fear of what is next. Circumstances dictate that some preparation must be done in anticipation of what is coming, such as selling the house, but I don't have to spend all day there. I have found that my children follow my emotional lead, if I try to live in that graditude for what we have, they seem to follow. I have also found it is a team effort, maybe your little guy can learn to help out, perhaps more than other 8 year olds, but, this is a team deal, you know? My son, who was quite lazy, has learned recently that it isn't so bad helping around the yard, and helping around the house. I think he even feels pretty good about being it!
This disease is so incredibly devastating, but living it first hand sure does teach us about the things of real value, about compassion for our fellows. I am certain that our children are going to be given gifts of wisdom and charachter that wasn't asked for, but can be a positive side effect of living with ALS. I wish you the very best, .... Andrea - wife of PALS Jim.