Hi Heather. I think your husband is delaing with all this information in the best way he can handle right now. In some respects he is right. You may be noticing some "restless legs" etc., but are the symptoms limiting you functionally? Are you still able to care for yourself? Are you working? Are you enjoying activities with your family and watching your children grow? You're probably in that early or pre-symptomatic period where HD doesn't have to be discussed or the topic of conversation every day. It is not altogether healthy to completely put it away for the "future" though.
My husband was already fully symptomatic when he was diagnosed (adopted, no idea it was coming) The kids knew something was wrong, so we opted to tell them that the doctor figured out what was happening to Daddy, it was called Huntington's Disease, and it explains why Daddy gets mad sometimes, and has a hard time moving and walking. They were 6 and 7 at the time. Of course, we did not go into brain degeneration, life expectancy, genetically inherited....all of that is more than they needed or wanted to know. We told them that now we understood what was happening, and hopefully the doctors can give him some medicine to make it easier for him. As the kids got older and observed more, they would ask questions, and I would answer them. I didn't give more information than they asked for, but I did not sugar coat or mislead them. My son was about 10 when he figured out that genetic meant he could get it too. Whenever we talk about their risk, we point out that many bright researchers are working every day to try to find cure. We are active with the HDSA in our area. We attend support groups and fundraisers as a family, and this year, we will attend the HDSA convention together as a family. My son is much more curious and inquisitive, but both seem secure in how HD is impacting our family. I guess I just never wanted our kids to come back to me later on feeling as if I had decieved them in any way. Give the information as you feel they can handle it, then wait for the questions.
I have recently taken both kids to a family therapist to give them a safe place to express any concerns they have about our family challenges.
I may or may not be right. It was right for us, and you will know what is right for you when the time comes.