This Perfect Universe

I am having trouble sleeping. I find myself not wanting to go to bed because I know it means waking up to another day and I wonder how I will have the strength to face it.

When I looked into Cora's eyes today, I saw a little girl who is very tired. I think there is a real chance that we will not be able to live that dream of coming home again. We had a long and very painful conversation with Cora's primary cardiologist, who came to the hospital this afternoon, on a Saturday, for the sole purpose of talking with us. It is his sincere belief that Cora will likely not be able to make that journey.

It was a crushing blow to hear those words.

And when I went back to her room and held her in my arms, I felt in my heart that she is making her way out of this life. I think for so long I saw that she was struggling, but I believed that if she could just grow, could just get a little stronger, maybe she would pass through this phase into one without so many problems.

But when I look at her now, I have to painfully admit that she isn't going to see that freedom in this lifetime. I see the difficult pictures in my mind of all that she has endured, and I just don't want her to endure any more. And I think she feels that release, and she accepts it, and she is at peace with it.

I feel very much that I am living a master class in spirituality. In trust, in love, in letting go. The most impossible mandates of our human condition, but the ones that I must strive to achieve in order to be the best mom I possibly can be to Cora and to my other children.

This afternoon the kids visited Cora. We put them in her crib with her. (Cosie desperately wanted to put Desitin on Cora's bottom, despite the fact that she was wearing clothes at the time.) Dom looked at her with the adoring eyes he always has for her. Their connection is limitless. The three of them were absolutely meant to be together, and it has been my great privilege to make that happen, even if only for this short time.

A very wise book I know well says, "we had to fearlessly face the proposition that either God is everything, or He is nothing. What was our choice to be?" If I choose "nothing," then this experience would mean nothing but a painful and cruel reality, and it would crush me. But if I choose "everything," than I am forced to believe that this is all a beautiful part of a loving god's perfect universe, and that even though I may never understand it, I can strive to accept it.

I am in awe of how my tiny ten-pound girl has changed the world. She has elicited love from the farthest corners of the world. She has made people better. She has made me infinitely better.

When Cora's time here is done, I promise I will not feel as though she was jipped or that her life was cut short. I will believe, as I do now, that she lived the life she was meant to live from the stunning moment she was born. A life spent gathering and spreading love. I feel very blessed that some benevolent being found me, imperfect and fearful, fit to walk her through her beautiful course.