It’s been a long time since I’ve written here. I used to think that writing was how I processed things, but I’ve realized recently that writing is a later step in my process of processing. I don’t write when things are too big, too deep, too raw. I don’t write when I’m depressed. I do process in writing, but not when I’m in the middle of darker days.
I think the hardest thing about sitting down to write after a period of silence is where to begin. How do I start to write about all that has been going on. I want to write about it all, I want to document it, I want to share it, but well, where to start after such a long silence?
People keep asking us how we are doing. They ask for an update on Bryan’s melanoma, they ask how Sage is doing, they ask how work is. And I don’t know how to answer. Because, these big things we’ve been dealing with – cancer, polymicrogyria, the continuous ups and downs of self-employment – these things haven’t gone away, but they aren’t the big overbearing things they were at the beginning of the summer (well, they are still big and overbearing, but it’s different) they have just become part of our lives now.
I remember a friend, who’s husband was diagnosed with lukemia just before we found out about Bryan, talking about how they came to a point where cancer, and all that went along with it, was just their new normal. I feel like that a little.
Bryan was recently accepted into the non-surgical arm of a study we applied for. So, for the time being there will be no more surgeries. We have decided to treat his melanoma more naturally, so that means that for the time being there won’t be drugs that make him feel miserable. There will be lots of supplements and vitamins, lots of acupuncture and body work, lots of healthy food and probably juicing. There will be lots of regular oncologist appointments for observation. And there may be other therapies down the line.
Life will never be “normal” again – at least not in the way it used to be. I don’t think there will ever be a day when I don’t think about melanoma and feel fear – I know the statistics, I know that even if we did get all the melanoma with his first surgery it’s likely to come back and come back on an organ. I live with that knowledge every day. Because of that life with never be normal again. But, in some ways we are entering a new normal.
There is not a day that passes by that I don’t feel fear, but there is also not a day that passes by that I don’t feel hope also. Life is moving forward and I cannot live in fear. We are helping Bryan’s body to be as holistically healthy as it possibly can be in every way we can and I cannot live in fear. I may fight with fear everyday, but I don’t deal everyday with the nitty-gritty realities of cancer. Most of my day is spent in other things and other thoughts. Life moves forward.
In some ways the same could be true of Sage and her challenges. Microcephaly, polymicrogyria, occupational therapy, these are my new normal. They are still big deals, I still struggle with fear over them almost daily, but life also moves forward. We are settling into these new realities about our daughter. They are still difficult but they are not consuming our minute-by-minute thoughts.
As life moved forward and a new normal settled over us, I have to admit that a depression and numbness also settled on us. The past month or two has been heavy not because there was some big new heavy thing or some update with the big things we already faced, but because there wasn’t. Our new reality was that these things weren’t going to just go away, we couldn’t just treat these things and be done with them. These were going to be our reality from now on. We found ourselves in the middle of a new normal that we didn’t know how to live into. We still don’t. But, we are slowly stumbling through to find our way. And the we are slowly defrosting and and beginning to breath again.
We are slowly trying to learn what our days and weeks will look like now. We are slowly trying to learn how to dream again. And life moves forward.
Rejoicing in the journey,