First things first, Ryan is mostly stable still. He continues to defy all odds and I am amazed at how little time his mind spends in the bad cancer place. How does someone get up every morning and wonder whether everything is still the same? Can I still see? Walk? Talk? I couldn't imagine living with that every day, but he does.
I say "mostly stable" because he has had some very minor changes in the past 2 days. He may have a bit more weakness on his right arm, is having some problems finding words at times and has had more fatigue. But compared to what they expected, this is really minor stuff.
Home care has been amazing as they continue to call or visit daily and check in on him. They think a bed might be available at the only hospice we are comfortable with for Ryan next week, and then we will have to have a real discussion about pros and cons. At this point, we are managing well at home and it is so nice to wake up with him beside me each morning and have him around the comforts of home. But there are significant risks of a sudden change happening at any time and because of that, it is likely safer for him to be at a hospice. You can see my struggle.
As we have achieved some "stability" in this new world, I have been struggling with how to spend my time. Don't get me wrong, helping Ryan around, driving everyone and getting his new diet prepped is a lot of work, but for "me" time - what should that be? Should I engage in some work things because it makes me feel strong? Should I get things done around the house while I can? Should I be spending every waking minute staring at Ryan and driving him crazy?
One thing I do know is that I feel that I have done a good job of "sharing" him with all of the people that visit and spend time with him and now I am worried that other than doing things for him around the house, I haven't had my time with him. So we are planning a dinner date tomorrow night to get some quality time with just us.
Talyn is doing well and asking lots of really hard questions as he tries to piece together what death is and what life might be like without daddy. He started play therapy again and seems much more open to the questions we all have for him when we check in, so that's an improvement from last time. But overall, kids really do see things much simpler than we do. For him, he feels comfortable associating people that die as rocks. Which I think is a fine analogy for now.
We continue to be grateful for this extra time we have as a family and of course every once in a while catch ourselves hoping that we will have much more. Then reality kicks in and we try and live in the moment. It's a hard balance to keep, but this time has given us that chance to breathe that we have been hoping for.