challenging

 I am always acutely aware of the fact that this is not just my story to tell. It is a story Rico asked me to share, but it is also the story of our children, his dignity - and most important the story of someone he never wanted to be. There is a sacred trust in being allowed to share our stories, and I don't want to break that - not for him or for anyone I love.

So I will just say that the past week has been challenging.  

Rico is not challenging. It can never be him. This disease is challenging. Even on his worst days, we remember that he is Rico - he is not what this disease makes him out to be.

In addition, it's been explained to us this week just how "extra challenging" our situation is. As we are getting some new people in our caregiving circle, I've been surprised to find out just how super shitty our particular case is. I just sort of figured all glioblastoma families were living our life. But I guess not. Apparently most brain cancer patients are walking around, living their lives, eating with the family, traveling, and doing things relatively "normally" until close to the end. New people are very surprised to find that he is dealing with so much. When we speak with new caregivers on the phone, they sound pretty understanding until we get to the sudden vision loss, ("Oh I'm sorry"), the previous sarcoma issue ("That's so tough"), but when we get to the fact that he is relatively healthy but mostly paralyzed, the phone goes silent - like completely pin-drop silent. These are people who do this for a living - they help people die, they help families survive and the most they have to say at this point is a whispered "oh my god".  

Noah headed back to school this week. I cried like freshman drop-off, but I am so glad that he is somewhere "normal" doing things a person his age should be doing.

Kaia and Tiny both attended Kesem this month - Nika as a camper, Kaia as a volunteer counselor. Kesem is a nonprofit program that gives kids whose parents have/had cancer a chance to spend a week at camp free of charge. This year's program was online, but did have one in person day. Thanks to a generous friend I was able to take Nika. We played kickball, went on nature hikes, ate shaved ice, flew on a tiny zipline. It was great to see her act like a kid.

We are so thankful for all of your love and kindness. Please forgive our lack of recent updates. Sometimes there isn't much to say except "Today sucked and tomorrow will probably suck too." Answering the old "How are you guys doing?" becomes a chore instead of an invitation. Having said that - we hold out for the good days, because they are still there - and we'll take what we can get. Thanks for hanging in there with us.