Fear and Beauty

I had, all things considered, a very beautiful day.

Of course when my alarm went off at 4am, the first thought I had was, we are going to lose Cora, and I cried for the first of what seemed like three thousand times today. My heart continues to be very, very heavy. But when I arrived at the hospital this morning, something beautiful happened. Cora was sleeping, and her nurse told me she had seemed overly groggy overnight. However, the moment I walked in the room, she woke up and looked me in the eye in that very earnest Cora way. Then she started kicking and smiling and over the next hour she looked happier to me than I'd seen her in weeks.

It was the most pure and reassuring feeling that we have made the right decision. She seemed relieved. And she seemed free.

As I always do, I treasured my time with her today. We had so many nose to nose chats, so many face grabs (her grabbing mine, that is), so many lip smacking kisses, and so many times of me putting my cheek on her tummy and her patting my head like a drum.

The best things in life.

Grammie and Papa came for a long visit. Honestly, I could hardly watch them interact with her, feeling so sorry for what Cora will miss in that priceless relationship. And what they will miss in her.

I spent much of today on the sad, bitter side of things -- being walked through and signing a Physician's Order for Life Sustaining Treatment wherein we legally opted out of interventions, meeting with the Palliative Care service, calling to inform our wonderful pediatrician of the decision we've made. We have a meeting arranged with the Hospice pediatric nursing supervisor, and our insurance company has been informed that we have shifted from curative care to, as they call it, end of life care.

Those words clang around in the deepest part of my heart. An awful, unnatural feeling; a panic. But at the same time, the road we're walking feels deeply true and right.

All day I kept waiting for someone, anyone -- a doctor or a nurse or a specialist -- to come in and say, "don't you think you're being a bit dramatic?" Or, "Give her the benefit of the doubt! She will recover." But of course they never did. Instead all they said was that they deeply respect us and will support us in whatever lies ahead.

So I guess we are really here.

After the hospital today we had the very carefree, very wonderful opportunity to meet up with my sister and her family and our dear family friends for swimming and barbecuing. It felt a thousand miles away. There weren't any forms to sign or talks to have; just the feeling of family and of watching the kids play with their cousins -- for those hours, so free from all the burdens of this grownup life. My niece read the kids their bedtime story. I sorely wished Cora could have been there too. (And my other niece and nephew for that matter.) If I could have them all there on that one couch, I feel I could protect them forever.

And the only thing was that every few minutes I had the profound feeling that I was forgetting something, or that something was missing, or that I had lost my child.  Like one of those terrible dreams. And then I would get the stab underneath, that there is much truth in that dream for me. For us.

What I can tell you is that the mountain of love and support that came our way today deeply and profoundly moved me. Each email, each call, each comment. This love has changed our life.

If I feel anything, it is that I am not alone. And alone is the scariest of all human conditions, in my opinion. I can say with some certainty that I will never be free from fear or sadness and heartbreak, but I do feel safe in this universe that remains overwhelmingly generous.