An observation at the market

Cora Bear had another good day today. On the medical front, although most everything was status quo, Jason said she seemed overall alert and happy all day.

One change was that they changed Cora's NG feeding tube (through the nose, into the stomach), to an NJ (through the nose, into the intestine). Cora "eats" through that tube, and she's on a constant infusion of milk, because it requires her to expend the least amount of energy to digest her food. Even still, because of her heart failure, Cora has a hard time keeping it down. The NJ tube will hopefully help her, which will be great because what we want more than (almost) anything is for her to grow. If Cora can get bigger, things will be overall better, especially if she needs a VAD, a pacemaker, or another surgical intervention before transplant. "Operation: Get Some Chubbies" is the primary focus of her medical team.

She went for another wagon ride with Dad today, and parked in front of the window for a long time. When she got back to her room she was happy to just sit in her wagon next to the crib for a while, enjoying the new position and different vantage point.

She had several visitors today and seemed to work her magic on them all, continuing her work of making people who love her feel grounded and good. I'm telling you, when you look in Cora's eyes it feels like someone very old is looking back at you, and she just kind of fixes you. 

Meanwhile back in San Rafael, while the kids and I were at the market I had the opportunity to see a few moms wrangling their kids in the checkout line. They were all clearly somewhat annoyed -- kids grabbing at things, whining for things -- moms in a hurry to move on with whatever the next scheduled part of the day was.

I have been that mom about three thousand and six times. But today, I wasn't.

In my normal life I am someone who is very much trying to do it all. Until about four months ago, I woke up every morning at 4am, worked at a wonderful but demanding job, came home and tried to mother the crap out of my kids, then rustled dinner together, Jason and I bathed and otherwise manhandled the kids, put them to bed, and then I returned calls, worked some more, hung out with Jason, and tried to have meaningful relationships with my friends in between.

I don't have much going on these days. In the heartbreak of having a sick child, I got beamed to a magic place where the only thing that matters is the real stuff. I don't have to name it all, because of course you know it already. It has to do with love, and mostly with accepting that life is painfully short -- whether or not you're in a situation like ours. And that the only way to combat all that fear is just to be where you are, as much as you can. 

I know it won't last forever. One day, some way, this situation will have passed and it will be something I talk about, that I went through, a long time ago. The logistics of life will start up in all their fury. But I hope this part of me stays a little bit in tact.

When I live wherever I am in each moment, I can see that what we're going through is just life: ginormous, graceful and beautifully connected. Filled with red wagons.