What I Know

Cora had a rough day. It started out with a high fever which then led to multiple needle sticks for blood draws, lots of throwing up, and more tests. Her white blood cell count spiked so it is pretty clear that she is brewing a bug. She was whimpering most of the day and I could tell she didn't feel good. Poor little bunny.

They moved her out of the ICU and into the step down unit until her surgery. We knew it would happen and that they had just wanted to get a good sense of her abnormal heart rhythms, but still we miss our private room!

Earlier in the day they had been talking about scheduling her surgery for possibly Wednesday or Thursday but I think it's safe to say that idea is off the table for now. It would be very dangerous to operate if she has any kind of infection, so the doctors will be conservative and no doubt err on the side of caution when scheduling it. She started on a course of antibiotics this afternoon, and we will have preliminary results from her blood cultures tomorrow morning. It's just another situation where we will have to wait and see.

Earlier today someone sent me a link to another mom's blog, the mom of a 5-year-old child who, like Cora has a genetic disease and all the host of problems that can accompany that. Only this mom lost her beautiful son this weekend. Reading her story sunk my gut and it hit me, as you can imagine, on a very personal level.

Sometimes I think of Cora's journey as though the worst is behind us and now that she has overcome heart failure, it will all be up from here. I'm always trying to make sense of everything, to create a beginning, a middle, and an end of everything. To pinpoint my location in the narrative. But when I'm honest with myself I have to admit that I have absolutely no idea where in the story we are, and while I know what lies behind us, I truly have no real understanding of what lies ahead.

I don't know the story of Cora's lifetime. No human being does.

As much as my heart connected with that mother who I've never met and likely never will meet, as much as it broke my heart, it also drove me into the present.

I don't know what's coming but I know what I have right now. I have a beautiful, strong, brave, peaceful, and amazingly special little girl who has already spread a tremendous amount of good in the world. She has an army of prayer and a small city of people who believe in her, none more than Jason and me.

The message that blog gave me today was to appreciate and accept life exactly as it is today. Stop thinking: it will be better when, or... as soon as we get through this.... This IS it. And there could be nothing better than having these three perfect children, in this very moment, where it's all happening. These three that I am lucky enough to mother, and the one partner who never lets me down.

There is nothing better than the moment you realize you love a child beyond any kind of love you ever knew, beyond anything that comes from your brain or your ego, and without any conditions or limits. Cora reminds me of that love every day.