Initially when we heard the really bad news in early January, we had a period where we tried to adjust to it and then started putting some things in place. We hurried to get all of his legal documents current and had a lot of hard conversations. But since then Ryan hasn't had any big changes, so we've settled back into a new normal life. Most days I have some time with Ryan, he has a nap, someone else may visit and then Talyn, Ryan and I spend the evenings together at the pad. We eat dinner together, play a game and then Talyn and I go home to get him to bed.
On the weekends, we have been lucky enough to have him home for one or two nights too. Physically, his right arm continues to weaken, so he now has it in a sling to keep his shoulder and wrist supported. Some days he is very tired and others, surprisingly awake and alert.
At the end of last week, I caught a quick glimpse of another young brain cancer patient and his family, that we recognized from the Tom Baker Cancer Center. I told Ryan that he must be touring the hospice and we hurried outside to say hello. He is younger than Ryan, with a young wife and his parents were there too. It was at that moment that it struck me how unfair this all is. To us, we've always just accepted this as our life. But looking at a similar situation as an outsider, it seemed incredibly wrong. And that image stuck with me for many days afterwards.
Last weekend was a hard one mentally for us both. We had our hard time initially adjusting to the news in early Janaury and getting through the hard planning and conversations, but then we had some time to just be. But lately we've had another period where we have stopped and the reality of what is happening has hit us.
I have continued to try things to keep my energy up and reiki has been helpful. Our friends also arranged for me to have a hot stone massage - that was really helpful! Finally, I went to a work dinner and got to re-connect with a bunch of people that gave me a lot of positive energy, as they asked about Ryan and assured me that they are thinking of us and sending us lots of positive thoughts.
At that dinner, I had one conversation that really stuck with me. Someone pulled me aside to ask how things were going and in that moment, I let go a bit and told him that I didn't quite know where to keep my head these days. He said he didn't know either, but what he did know is that however things turned out ... "you will be happy". No one had said that to me yet, or if they did it hadn't hit me like this did. I actually breathed a sigh of relief and felt a bit lighter, with some new confidence that I could get through this and find happiness again some day.
In the last couple of days, we had another small challenge. Talyn accidentally poked me in the eye and when he did it, his fingernails sheared my cornea. I have been through a lot of different painful events in my life, but this one took the cake. I have never passed out from the pain and this time I came very close to that. I am on the mend now, after spending a couple of days looking like a "wanna be movie star" with sunglasses on at all times. One of my darkest thoughts has been "what if something really bad happens to me physically when I am home alone with Talyn? How can I handle that?". But the most important lesson I learned from all of this is that I can do this alone...if I need to.