Knowing what you have

Cora is still struggling away. She was about the same today, which meant not that great, but I felt progressively more worried for some reason. There seems to be an intensity in the air or something.

Not helping mitigate that feeling was a conversation I had with the attending physician who came by to say that, while he is hopeful that the cath will reveal a cause for the pulmonary hypertension that would be reversible or helped by medication, we should be prepared the the possibility that this could all be "very bad." In my understanding, they are concerned about the rapid pace at which the condition has presented, and they just don't know that there will be an easy answer. 

There never seems to be one.

Tonight Cora has a fever for some unknown reason. It could be that it's due to her working hard to breathe (which I believe to be the case), but out of precaution they have to send the full viral and infectious panels. Hopefully it won't result in a delay of her cath.

But enough about Cora and our medical labyrinth.

A while ago I wrote about "Cora's pen pal," a beautiful little girl who was born on the day before Cora, and whose parents became our dear friends as we, side-by-side, navigated the cardiac world. These two girls were very linked. One would have surgery; the other would have surgery the next day. One would get some scary news; the other would get news shortly after. But there was one step they didn't follow: Cora got to leave the hospital, and this little girl never did.

Last Thursday she passed away, having fought a very brave fight until the day before her eight month birthday. And today I had the privilege of attending her funeral and of saying goodbye.

I can't craft many words about this, except to say that by watching her family over the past eight months, and today, we learned something of grace and dignity and acceptance. And that they have found a way to gratitude despite the most unfair of outcomes.

I never imagined I would live in this world where the day to day problems just fade away, and the problems of your life become the very serious ones. But there is such truth around it all, and so little time wasted worrying about whether or not one of my children has developed a bad habit, or about what someone (who I may not even like) thinks of me. 

We are living life in it's brutal and glorious technicolor. 

I was thinking of the expression, you don't know what you have until it's gone. How untrue for this little girl's family, and for us. We haven't missed many minutes of it all, and we very much know what we have.