@nancy53
Thanks!! We also use FB Messenger, FB Portal and FaceTime. All are wonderful ways to stay in touch. My husband honestly doesn't even like to travel yet he would like time with his kids and grandkids. Sadly we have to travel to see them, or they have to come to us.

I spoke with my sons and they had an idea that just might work - rent a large house on the beach where we all have our own space (we always get the master bedroom on the annual family vacations.) I could be very careful in choosing the house so that he could be separate from everyone when needed, and that had a place where he could eat away from everyone if needed. We could also find a place that had a nice outdoor area for meals and activities and choose a warm time of year.

They both have researched his illness on their own and now understand what is at stake. So they are willing to do whatever we need to make things work for my husband. One of my sons is into music like his dad. They started this "5 at 5" daily ritual where my husband sends my son 5 songs he likes, my son listens to them on his evening walk, and they discuss the songs afterwards. This has brought them so much closer and has been very good for my husband. He just began texting a few months ago so it's a new world for him. Our other son decided this weekend he would start sending his dad daily short clips of mind-body connection type videos (he and I are firm believers in the mind-body connection - we saw it work in the 90s when I got very sick, was told I'd never get better, told the doctor not to tell me things like that and went on to do as much research as I could finding ways to heal my body that were more on the alternative side. It took 4 years but I fully healed and recovered and shocked them all.) I know he can't wish this away and that is not what my son or I believe in. We do believe that there is power in positive thinking and visualization, and having a firm belief that you will heal. So I think these short videos will be another very useful thing for him that will also bring them closer.

My sons are now sorry they didn't listen when I kept telling them they should do a sons/father trip to a place they all wanted to go. I said you never know the future so don't keep waiting. But they're young and they thought they had all the time in the world. This has changed their view a lot and this weekend they told me they regret not doing it and asked me if I thought they might still get a chance. And when. I told them he needs time for the prednisone and Actemra to work and gave them a timeline of 6 months to 2 years, not knowing myself what a good timeline would be. I think that would be another positive thing for my husband to have to look forward to. A trip with his two sons only. I spent a few hours with one of my sons this weekend for the first time in years. We're always all together. It was absolutely one of the best things we've done in a long time and was one of the highlights of my trip. My other son made sure to sneak in some moments alone with me too, though not as easy for him right now with a baby and 4-year-old. But we'll find the time somehow in the near future. It's crazy how we let time fly by without doing some of the most important things that would mean the most to us.