Sunday, September 21, 2014


Today was a slow day. It was the day my mom flew back to California after a 10-day stay, her third and final visit since mid-August to help take care of Vivian. Her departure makes me sad, and I also feel some relief and, mixed with that, fear, for we're at the end of our summer trial. We have seen Vivian through halo traction, surgery, and (knock wood) the hardest part of her recovery. Now what? My god, I think, can we do this by ourselves? When Vivian was a baby--my mom was here then, too, and so was my aunt, both of them for months--one of our home nurses said to me, "This is just a season." It was comforting, and I told myself the same thing before we left for Salt Lake City. "This just a season. This is just a season." And now that season is just about over, like how yesterday was summer and today is fall, only you can't feel a difference in the weather.

Vivian had a job for me to do today. I was to repair Teddy, one of two stuffed animals she's had since she was very small. (The other is Bunny. Bunny has been through a lot, including a night in the gutter outside Tacoma's El Guadalajara--who hasn't been there?--and, well, being lost to eternity aboard a Delta Airlines flight to JFK, a tragedy that inspired the ABC series "Lost" and prompted me to rush-order a replacement Bunny, dubbed Sister Bunny, from the organic-plushy makers in rural Vermont from whom our friends Alison and Cady ordered Bunny in the first place.)

Vivian took this photo of Bunny I on Valentine's Day of 2010.
This is before Bunny's overnight in the gutter.
Imagine the "after" shot.

Teddy's life has been more mundane. Teddy was knitted for Vivian by my brother, Matthew, who no longer knits but was once a real pro. Somewhere I have a photo of Vivian receiving Vivian on Christmas morning of 2007 or 2008, but I can't find it right now. Anyway, she received Teddy, and she loved him instantly. He and Bunny come with us wherever we go. So of course they accompanied us to Salt Lake City.

Here they are, all packed and ready to go.

In the image above, you'll notice Teddy's skin graft, but you'll be too polite to mention it. It's ok. He had a hole in his face, and my brother was too busy to repair it, so Teddy went to the only surgeon he could afford (me), and I knitted and purled a square that almost matched his fur, and I threw in a scarf for free.

Poor Teddy, though. Vivian loves him because he's so flat, and she likes to use him as a pillow. Trouble is, for four of the weeks that we were in the hospital, Vivian had pins protruding from her head.

Teddy took a beating.

This left me with the grim task of restoring Teddy to his former glory or, barring that, of making him whole again. I took it on because, well, that's what I do.

Teddy declined anesthesia, but he did bite a bullet.

Knit, purl, knit, purl, sew, sew sew... some more, sew some more...

"The crying only makes it worse, Teddy. Here, have a swig of this."

Knit, purl, knit, purl...

In the end, Teddy took the needle and thread from me and finished the job himself. That is one tough bear. Stoic, too, for the most part.

"I am not an animal!!"

So, yes, it was a quiet day, a day of transitions. Summer is behind us, autumn is ahead, and Teddy has resumed his place under Vivian's head. When you see him, he would appreciate a nod to signal your esteem but nothing more. He leaves the theatrics to Bunny.

Saturday, September 13, 2014


Well, we're home. We are home. It feels good, and it feels a little strange. I'm still floating in some space between where I needed to be to get Vivian (and me) through the halo and the surgery and where I normally live. Yesterday I went to my office briefly to print something, and I ran into a few people. It was nice to see them and to chat with them, and afterward I felt exhausted and a little hollowed out. I think that's just going to be how it is for a while, and probably my stamina will return a little each day, and then there I'll be again.

When I was in my mid-20s, I became aware of my tendency (ability?) to dissociate from time to time, only I didn't immediately recognize it as dissociation. I was a little worried about it and a little intrigued by it, kind of like how you feel in a lucid dream. Over time, I went to therapy and practiced mindfulness, and I filled my life with people I actually wanted to be there, and now it rarely happens. In fact, it may never happen--I haven't noticed it for a long time. It's good to occupy one's own body. During a period of intensity, it's also wearing. Is there such a thing as hyper-association, where you focus so sharply upon what you're experiencing that the rest of the world falls away or, if it doesn't, you wish it would? This is sort of what happened to me while we were in the hospital.

So now we're home, and I'm slowly reorienting myself to the people and the details that I put on fade because I felt compelled to.

Vivian is coming back, too, and really much more quickly and ably than I am. I was very worried about flying home with her because while she could walk on her own at that point, she was very wobbly, and her movement was slow and restricted. I feared the airplane lavatory! She also hadn't sat up for more than an hour or two at a time, and that only once, so I didn't know if she'd be able to take 4-5 hours of sitting. The days immediately after surgery were very difficult. She was in pain, but even so we had to move her from time to time, and it took 2-3 people to do so, none of whom was Vivian herself. On the second day she had to walk, and it was challenging and not at all intuitive because her brain hadn't yet made sense of the new configuration of her spine and her muscles. Because of the pain and because of the pain meds, she didn't sing and she didn't laugh for several days, maybe even a week, and that was weird to experience. Most of us laugh a lot, I think, and when someone stops you notice. It's the same with the singing: my kid sings all the time--last spring her t-ball coach told us she liked to stand near Vivi in the field because she spent the whole game in song--so it was concerning when she stopped.

But, really, each day she has improved markedly over the day before, and now she's walking on her own, and I think we will try to bring her to school for a few hours on a few days this week. We're still managing her pain with meds but only minimally. My hope is that she can return to school full-time after this coming week. It's also my worry because her bones haven't yet healed over the screws, and I want desperately for her not to get knocked by some kid or to trip or fall and so dislodge the rod.

I return to classes this coming Monday. To begin to explain how I feel about that, allow me share this image:

To the left of the frame, my bra. Toward the center, the underwire, which is to say, the support, the very backbone, of my bra. While I was on the plane on the way home, I noticed this state of affairs. You see the correlation here. The bra : my breasts :: my ability to support anyone : anyone. I am that bra! I am interested to find out how all of this will play out in the classroom. Thursday's arrival of a box from Wacoal (a rush order) suggests that, at the very least, come Monday I will appear strapped in and ready to go.

Speaking of apparel, here's another thing: I threw away two pairs of shoes because I walked across the central activities room so many times wearing them, and that walk meant so many different things to me, was so laden with worry and fear and anger and love, that I could not bear to look at those shoes again. So I am down one pair of flip-flops and one pair of slip-on sneaks. My sister-in-law, who stayed with us this week to help us with our transition back home, tells me that Vans are in again (I knew this day would come!!) and that I need a pair of ankle boots. Kristin also helped me to purge enough stuff from my house to be able to incorporate the many gifts Vivian received while we were in the hospital. On Wednesday I drove a carful of items to Goodwill, an errand that felt simultaneously good and bad. I love clearing out unused things from my house, but I also feel the weight of consumerism and waste even after I've shaken it off. My mom will arrive today for a 10-day stay, and I will enlist her help in getting the new things put away. Bill lowered Vivian's bed and pushed it against the wall--we're guarding against falls--and I'm finally writing this update for all of the people who have been so kind as to ask how we're doing, to offer their help, and to give us some time and space to recover.

The calendars in my house still read July when we came home. Bill had never flipped the months while we were gone.

You may be able to make out that little magnet on July 31st that says, "Doctor," and has a bandaid on it. That was the day we were admitted to the hospital. Now it's mid-September, and all of that is behind us. It's also in front of us because, you know, we will be back there in the spring for another surgery, and one day they will almost certainly put Vivian in a halo again. But for now we're not looking at that.  Today it's sunny in Tacoma, and when I look outside the lines seem crisp.

Monday, September 1, 2014

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.”