As I sit here typing, it is unclear whether or not my son’s surgery has failed and he will have to go back for yet another surgery. The last few days have been another blur of uncertainty, another whir of calls to doctors with ambiguous predictions and dubious things to try at home to see if the complications he is experiencing can resolve themselves or not. Just when I thought I had no more energy to cling to the carnival ride that has become our lives, it has taken yet another hairpin turn.

Today I took my son out of the house for the first time, because he was getting cabin fever. I told him he was underestimating how much energy an excursion would take, but he staggered around a store like a drunken champ. He was giddy with happiness to be out and about, and it was me who returned home with shaking legs and a spinning head, faint with exhaustion. He fell into bed while I got his medications together and put up a pot of soup. Technically the outing was a success, but truthfully it was a disaster. Or maybe the reverse is true. I have no stamina and no reserves of energy to draw from for these types of activities. We weren’t able to find what we went out to get, but it didn’t matter because my son was glad to be among the living again. As for me, I consider it a valuable lesson learned…

As far as his medical status, I am trying very hard to keep a positive perspective. As a person of religious faith, I know that everything happens for a reason. But I know that as an intellectual principal, and I tend to believe it with my mind. My problem is that I don’t always feel it in my heart. So I have moments where I am almost incapacitated by worry. Even though I can know things like, “If God takes you to it, God will get you through it”, sometimes I still feel panicky. I know other people who are the opposite. Their hearts overflow with love for their fellow man, or desire to serve their Creator, but when it comes to intellectual principles, they come up short. Sometimes I envy them, because I think their faith is more pure than mine. I imagine them having an easier time, and feeling more connected spiritually. Meanwhile, I struggle with trying to walk the talk of my religion when I face tests like the one I am going through now. It isn’t easy stuff. But if it was, I guess it wouldn’t be a test.

I feel like an ocean lives inside me right now, with the waves and the undercurrents all battling for limited space, and all sloshing around my guts just mixing everything into a giant slush. I am unglued by very mundane things like putting away clean dishes, but I am more unglued by the idea of seeming unglued so I am managing to hold it together. I am proactively aggravated that some of the people reading this blog will be thinking, “Here she goes again, sharing too much personal information. What a hot mess…” And I angry at myself for caring what other people think. So I am leaving those sentences in, and those people can judge me or give me a break.

I am upset at the cosmic injustice of not being able to protect my child from everything he is going through, and very relieved that it isn’t worse, and that it isn’t multiple children, and that it hasn’t been way worse before now, and that so many other things are not wrong on top of this. Gratitude, gratitude, gratitude.

And not to let fear wipe that away.

That is the main thing.

Always the main thing.

Always.