Every time I want to write an update on Ryan, I for a second wonder if I'm jinxing myself. If by writing something, another change will come right away. I know that's ridiculous, but I've always been a bit superstitious and this experience has made me more on edge all the time.
Since last week, Ryan's left side has seen a bit of weakening and that has made it hard for him to get around much at all anymore. He spends most of his days sleeping and is up for about 1 hour every day (if you put all of the time together). But in that time, he is mostly quiet or is trying to communicate something that you can't quite understand. It reminds me of when Tricia was in ICU. They are trying so hard to tell you something, but it's not coming out the way it should. So it's like the hardest game of charades you've ever played and if you don't figure out the answer very quickly, they will get frustratatd and just go back to sleep.
Ryan still tries to get up to go to the bathroom, probably mostly from his amazing fighting and stubborn nature and partly his memory forgetting that he can't, so Kevin, Jo-Ann and I are doing a sleeping rotation in his room. We have a little cot set up so that if and when he tries to get up, we are right there to help him. Then on the other nights I am either at home with Talyn or offer him the option of staying here with me in the guest room.
Talyn is still up and down. Some moments are better than others and he still asks why the doctors can't just cut into daddy's head and get the tumour out! When I told him that it would be too dangerous and would hurt daddy more, he said that he wanted to be a doctor so that he could help fix people. Wouldn't it be interesting if that is the good he gets from this situation? The motivation to study to be a doctor and try to "fix people".
I am trying to manage my energy and be here with Ryan as much as I can to try and get that little bit of Ryan time every day. We all still struggle with watching him within this body that is failing him now and his mind that is mostly foggy, knowing that he wouldn't want to be here. But then we see a couple of moments a day that show us that Ryan is still there - a head nod with a half smirk or a sassy word and we try to take it in and cherish it for the days when there won't be anymore of those.