Bones weep.

It’s the night before Vivian’s surgery. It’s 10 p.m., but Vivian and I are both still awake. She was in good spirits all day and into the evening, but when everyone left the room tonight she said, “Mama, I’m scared.” We talked for a while, and then I read her another story, and a few minutes ago I resorted to playing lullabies. It’s funny: the album playing now is the very one I used to play for her when she was an infant and we were in the NICU at Children’s Hospital. I guess my unconscious mind knows what it’s doing.

This is such a weird night for us. She’s been in the halo for 33 days. We’ve been in this hospital for that long. And now tomorrow they will take the halo off, and they will put the rod in, and then we begin the next phase of this journey. But Vivian is a little reluctant to leave the halo behind, and so am I. As badly as we want to get out of this place, the surgery lies between us and home, and surgery frightens us.

The doctors have told me everything I have wanted and needed to know, and I’ve told Vivian everything that she has wanted and needed to know. But there’s no way not to feel distress when doctors say that “there will be an incision here and an incision here, and then we’ll feed the rod through,” because this is my baby’s back we’re talking about. I don’t want them to cut her skin. I don’t want them to drill into her bone.  “Bones weep,” one doctor told me yesterday. “You can’t clamp them to make them stop.”

Bones, then, are like mothers. Drill into me, I thought. Leave her be.

This is that thing coming up again—that mix of anger and panic and desperation that makes me want to scream at them to make it stop, that makes me want to run out of here with her—but then I remember (again, for the hundredth time) that they didn’t do this to her. They are helping her. 

Now it’s 11, and she’s still awake and so am I. The nurse just gave her Ativan and melatonin. That’s alarming, you know? But it was also a good idea. I’m so tired. I think I have to end this post. There were other things I wanted to write, like about how I’ve become afraid to leave this place, and often three or four days go by before I will, and then when I do I drive very carefully and I don’t stay out long; and about how I started crying tonight when I thought I was going to lie down but instead called Bill and was overcome by everything that I have been containing for all of these days. This surgery is not a huge deal—they do these all the time—but what it represents, and what it culminates, and what it begins: those things are huge, huge deals.

The night before the halo placement, Vivian grabbed the pad and pen from the hotel room and busied herself for a while writing something. That piece of paper I saved, and I hung it on the closet door in this room. Tonight when she was distressed I took it down and showed it to her. I said, “A very smart girl wrote this for you a few weeks ago,” and it—her message to herself—seemed to soothe her. She stuck the note to the safety bar on her bed, just at eye-level. Here’s what she saw: the butterfly she had traced and, under that, what she had written: “You’re almost free. Let it go.”