God, on the fly

Blaaahhhhh......

Cora is back in the hospital tonight. I knew it. I am getting good at predicting these things, if nothing else.

It was clear that she was struggling this week. She seemed to get progressively worse with each day -- and even more so in the nights. She had a few times of reprieve but overall she wasn't happy this week.

The nights have been out of control. Usually beginning at 11 or 12 she starts coughing, gagging, crying, and thrashing around. She has started breathing harder and faster, and even I, a person with no medical training (but who arguably could apply for an honorary degree in nursing) could tell that her liver was more enlarged than it had ever been.

Jason took her in to see her primary cardiologist at UCSF this afternoon and he confirmed what we both knew. That Cora is yet again (or still, depending on how you look at it) struggling. For whatever reason, despite the last few hospital interventions, she hasn't been able to change her trajectory. Over time, she's just getting worse.

So this time they will give her some IV medications which are much more effective than the oral ones at home. They will also keep her in the hospital until they can do the heart catheterization. Hopefully that will reveal the reason for Cora's continued difficulties. At this point her problems most likely are either attributable to her chronic lung disease, or they are a result of an open hole that Cora still has in her heart. I'm just hoping to get to the bottom of the cause, because I'm a type A, and life always feels better when there is a plan.

As sad as I am that she is not under this roof tonight. I can accept it. Really, the only thing worse than her being in the hospital is her struggling or suffering. And I felt that she was both struggling and suffering the past few nights. Especially last night when nothing I did could help her breathe easier or rest at all, and when finally at 2:30am Jason capably took over and told me to go sleep on the couch for an hour before I had to get up for work.

We are both dead tired, and I guess you could say that god intervened.

Speaking of god, Dominic asked me tonight, "what is god?" I am a spiritual person and I do pray, but I've never been much of a public pray-er and I'm not very good at knowing when the right time is to tell your kids things. I'm sure I'm supposed to be actively teaching them things (what though? Reading? Greek mythology?) It's just too hard to know how to be a professional parent, so I figure my kids will just pick things up when the time is right. Keep it mellow. That's my motto for life, as well as for parenting.

Anyway, Dom asked about god tonight. As a slacker parent, I had not prepared an answer to this question. (And by the way, how the heck am I supposed to know anyway?) On the fly, I told him god is a loving thing in the air around us, all the time, that does nothing but protect us and care for us and squeeze us, wherever we are, all the time. That that same power is loving and protecting daddy and Cora, even though they're at the hospital tonight. Just like it's loving us here in our house.

"Oh," Dom said. "But why does the squeezing not hurt us?"

I explained that it was good squeezing. A very wonderful feeling. "You know when something really happy happens, and you feel so good that your heart feels very big? That's god."

"Like when we're all together?"

"Yep. Yes. That's it."

And the other thing that feels like god is Cora swimming. I don't know what it is about it, but when she doesn't feel well and when I don't feel well, I take her in the pool. I swear, she floats her pain away.

Yesterday we had the good sense to take Cora in the pool. And both seeing her, content in the water, and having had the good sense to take her swimming the day before another hospital stay, both feel like a bit of god's grace.

The memory is a happy thing that's keeping me going today.