Home

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.

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.” 

Furlough

Yesterday we went to the zoo, all three of us, plus Laura from Child Life. It was Vivian's first time off the hospital grounds in four weeks, and she was delighted to be out and about. Aside from seeing giraffes, her favorite part of our three-hour furlough might have been the van ride itself and the wheelchair lift into and out of the van. 

At the zoo, people stared. Now we know how the animals feel. Like them, we made eye contact with a few of the looky-loos but ignored most of them. I was tempted to throw excrement at one or two people, but I forbore doing so and am probably the better person for having exercised restraint. 

Seriously, though, we talked later about our newfound recognition of what people must (might) feel like when they have an obvious or unusual difference or disability. In our experience, at least, it pretty much sucks to be the object of curiosity even if you understand people's impulse to look. Maybe over time one gets used to it, and maybe not. Maybe it's better if people just come out and ask, "What's that?" or "What's wrong?" and maybe not.

At any rate, we let the people look, and we enjoyed our time at the zoo. From what I could tell, the animals at the Hogle are mainly in rehabilitation, and when it's time for them to leave they go to a facility of equal or better quality. For example, the camels that were once there are now at a camel preserve. This kind of practice makes it easier for me to tolerate and even to support zoos, but I still get sad looking at these majestic creatures in habitats that are large and lovely but that still pale in comparison to the wild. I wonder at the human desire to see everything with our own eyes or, worse, to control and even kill to assert our dominance. Case in point: the yahoo at the wolf habitat who said to his 9-year-old daughter, "We kill those at our house, huh? We kill them because they eat our cats." He was saying it as much for us as for her. His wife laughed and beckoned her husband and kid into the reptile house: a fitting place for the likes of him. I thought, "Yeah, or you could leave your cats inside, a-hole." And I thought, "I hope one day you are mauled by a wolf." 

Terrible, right? I shouldn't think such things, let alone so close to my daughter's surgery date. I should envelope that idiot in love and healing, and then maybe the universe would repay me in kind. Or maybe the universe is a friend to the wolf, so we're ok.

When we returned from the zoo, I felt relieved. Our van hadn't been t-boned at an intersection! The pins in Vivian's halo hadn't conducted heat from the sun and scorched her skin! There had been no lightning. The clamps in the van had held her wheelchair still. Safely back in the room, Alex and I crashed. When we woke up, I felt like I was getting a cold. That is no good. Vivian's surgery is (re-)scheduled for Tuesday, and she cannot get ill between now and then. Honestly, I don't know how we would handle another delay. I might just throw some excrement. To guard against that possibility, I went to Whole Foods last night--it was a less traumatic experience this time--and bought 10 packets of EmergenC Immune, five for Alex and five for me, one for each day between now and Tuesday. This morning Alex woke up feeling exhausted, so I sent him away to sleep. I'm two ticks away on the crazy dial from bathing Vivian in Purell. We've got to make it intact to Tuesday.

Then Tuesday will happen, the surgery will happen. I saw Mike Pond in the cafeteria this morning. He promises to be tanned, rested, and ready to go after the long weekend. Excellent! May Dr. D'Astous also get good rest, and come Tuesday may he work some art and magic on Vivian's spine. May Vivian herself stay healthy and happy and not too scared between now and then. And may Alex and I bear up. We are tired and cranky, but we are almost there. We are almost there!

Tomatoes!

My thinking is, no day can be bad that starts with a delivery of garden-grown tomatoes.

Mike Pond brought us these babies, picked fresh this morning. I've been hearing about his tomatoes for a few years now, so I'm looking forward to tasting them. I think I'll order toast for breakfast and put a little cheese and tomato on it. With a cup of coffee that will be delicious and will taste a little bit like home. Much needed and much appreciated. Thank you, Mike!

We've been languishing a bit from the cafeteria food. It's not that it's bad--it's actually decent fare--but it's so different than the food we normally eat, heavier and very meaty and featuring lots of sauce. Also, mealtimes sort of tumble over each other, so that by 5:30 p.m. we've eaten (or at least been served) three huge plates of food. The effect of this over time is to feel constantly full. You may be thinking, How about a salad? How about some veggies? Yeah. Well, I do my best, but any salad bar loses its luster after 27 lunches and dinners, and I try to eat the boiled vegetable medley, I really do, but it's hard for me. Every once in a while the universe (or the cafeteria staff) throws us a bone, like yesterday, when at lunch they served a squash and string bean medley that was tasty and put me in mind of squash from my garden over a bed of pasta with butter and salt and pepper. I think that that will be my first meal upon returning home. And last week they served spaghetti squash one day--equally delicious.

Anyway: the tomatoes from Mike Pond = Glorious.

Today is a big day at Shriners. There will be 12 surgeries. I haven't seen it this busy here in a while. All the docs are here in their scrubs, and there are more nurses than usual. You can tell that the doctors love surgery days. They are wide awake and springy, whereas on clinic days they remind me of how my colleagues and I look on student-conference days. I'm drawn to the energy out there today. I feel like hanging out at the nurses' station and talking about the patients and the procedures--you know, talking shop--but this isn't my shop, and ain't no one telling me about patients and procedures. I think maybe I miss work. I know! Isn't that weird?? But it's the beginning of the school year, and I'm so removed from it all. Ordinarily I'd be finalizing my syllabi and going to meetings, thinking during the meetings about all the work I still have to do to my syllabi, and I'd be lamenting the end of summer and marveling over how quickly it's passed. Instead, I'm counting days until Vivian's surgery--seven--and until we can go home--probably twelve--and feeling like August has been eternal, like I've never spent a longer month.

My hope is that when I'm in the thick of the semester, still exhausted and disoriented from my experience here and worrying more than usual about Vivian, I will remember that time is 99% perception and 1% pink slime, and I will shift the way I look at it all.

And another thing: I hope I remember what is and is not important. What's important is life and health and love and connection (emotional, intellectual, physical, and maybe a couple of other kinds). What's less important is everything else, some of which is actually unimportant. I'm afraid about Vivian's surgery. I can't remember what I've written and what I haven't, so I may be repeating myself here. When Alex and I talked with Mike Pond a couple of weeks ago about what to expect after the surgery, he urged us not to worry overmuch and, really, not to place our worry and Vivian's spinal rod at the center of our lives. "Don't become crazy," he said. "Some people go crazy." Got it. Check. I asked him what he worries about. He said, "I worry about the surgery." He worries about the surgery because in a way it's the most important thing--it's life, right? and it's health, and as a matter of fact it's also love and connection. Provided Vivian's surgery goes well, all the other stuff will work itself out. If Vivian's surgery doesn't go well, everything falls apart. This is why I'm scared. Also, I hate to provoke the universe by expecting things to go well.

Some of my friends are big on putting intentions out there and watching everything fall into place, or they trust in God or something like God to do what she/he/it will. I see the appeal of these practices, but I'm just not wired for them. So basically I hope, and when I find myself fretting I will myself to think about what is instead of what may never be. Right now, my fingers are on a keyboard, and a woman is cleaning the bathroom and whistling and humming, and I am annoyed by that because I'm trying to write, and I hear a lawnmower outside and the ventilation system inside, and my right foot is falling asleep.

In between the paragraph about fear and the paragraph about faith, I ate one of those tomatoes. It was the real thing, the kind of tomato that reminds you that it's a fruit. Hey! a guiding metaphor for this day. And I ingested it, with salt and pepper and a little cheese.

Starting to crumble and going public with that fact

What with all the personal essays and Buzzfeed quizzes on the subject of introversion v. extroversion that have made the rounds on Facebook in the past couple of years, I've decided that I'm an introvert. I don't think I used to be, but anymore I feel restored by spending time alone, and while I enjoy social interaction, I prefer it in small doses and small groups (pairs are even better); too much interaction exhausts me.  That's the popular definition we've all internalized, right?

Pity, then, that I've been in a hospital for three weeks. Almost to a person, everyone I've met and see every day is nice and easy to talk to. And still I have become prickly because of all of the talking. Talking, talking, talking: at mealtimes, during nurses' visits, in the play room, everywhere, all the time. Desperate for privacy and quiet, I have begun to avoid the common areas, but people also come into our room. I have hung a sign on the door that says, "Please knock before entering. Thanks." And then, to soften the message, to make it sound less snappish (the period after "Thanks" says it all), I shaped the sign into a word bubble and taped it near the mouth of a paper sheep. So now everyone knocks, but they still come in--of course they come in; they have to come in; and, as I said, they're really nice--and I feel a little edgier every time. When there's a knock, I say, "Oh, my god," and Alex yells, "Yes? Come in!" in a cheery way. It's good that he's here.

Yesterday was an off day for me. Bill went home, and that was part of it--the angels cry when our family leaves--but also this place is getting to me. Carolyn bought Vivian and Taylor lunch from the outside world, and we all ate together. (Taylor ordered Taco Bell, and Vivian ordered Vegan pho. They are a study in contrasts, but they are pals.) As you might expect, over lunch there was conversation. We talked about the street numbering in Utah, which, if you are an outsider, is maddening. East 800 South, anyone? But then Laura (another child life specialist) mentioned Prague, and Carolyn brought up Croatia, and I could have kissed them. It was more talk, but somehow this talk was restorative. I think it took me out of here a little and engaged my imagination in something other than anxiety and fear over Vivian's well-being. 

That's what people's letters do for me, too. When I receive one, I tuck it away in my purse and read it when I'm alone. My grandmother once showed me some chocolate that she had hidden in her toilet tank so that she could enjoy it without my grandfather haranguing her about her weight. We share DNA, she and I. It's a form of eternal life.

Because yesterday was so bad, I dug into the stack of postcards my friend Alisa had given me for moments like this. She wrote a message on each one to provide some comfort or perspective. Yesterday's was that part from the Regina Spektor song from Orange is the New Black: "Think of all the roads. / Think of all their crossings. / Taking steps is easy. / Standing still is hard." It was such a funny thing to draw that card because I've been thinking so often about the parallels between this and that other kind of incarceration. Also, I watch that show, and those lines have always stood out for me in the blur of the song. It is very hard to stand still, and while I've learned this lesson at several points in my life it has not become any easier to take. Well, maybe it's become a little easier; one gets practice. But it doesn't come naturally to me. 

I wonder if Alisa still feels the truth of these lines. For the past nine days she's been hiking the Wonderland Trail, which goes all the way around Mt. Rainier. So many steps, and they can't all have been easy to take. She'll be back tomorrow, so she can tell us then. I wonder if she wrote this one postcard with her journey and my journey in mind, and if she figured that mine would be harder. If so, that was generous of her, don't you think?

I will try to be generous, too. As I wrote and erased that sentence, someone knocked on our door, looking for Vivian. "Yes?" I called. The nurse's aid poked her head in. "She's in the play area," I said. "Ok," she said, and she closed the door again. So simple, so unobtrusive, yet I felt my heart seize up during this interaction. I wanted to cry. I wanted to say, "Please just leave us alone." You see? I think I'm losing it a little. There was nothing wrong with what just happened, and the aide is so nice, and I like her very much. So I retyped, "I will try to be generous, too." I can hear some of my friends saying that I should start by being generous with myself, taking care of myself, cutting myself some slack. I'm trying to do that, really, but I'm also almost ashamed over how crummy I feel, and I'm trying really hard not to telegraph it to Vivian, who is doing quite swimmingly these days, and not to make the people who work here hate me. 

At times like this I wish I were a better person. Or is everyone this way? If everyone is this way, you have to tell me.  

Lots of love from flawed old me.

Catching up

"Time passes differently here; I've been here just long enough to notice that," says Bill, who has been here since Sunday morning and will leave tomorrow. He's agreeing with me. Poor guy has been hearing me talk about this phenomenon for weeks. Each day passes incredibly quickly. Like, right now I look at the clock and can hardly believe it's 3:15. It seems we were just at breakfast. Yet the days accrue at a painfully slow pace. Alex, Vivian, and I have been here for 20 days. Today is the 20th day. We have 14 days to go before Vivian's surgery, and then we'll be here for about 5 days after that. This means--impossibly--that we've just now hit the halfway point. What? How can that be?

I know that I can read this optimistically: we (probably) have fewer days remaining than days spent!  But, to be honest, that 19 days sounds long. I think of what we've done, and then I think: we have to do it again. How will we do it again?

Visitors help like crazy. For one, there's a third person available to spend time with Vivian, so Alex and I can occupy ourselves in ways that help to sustain us a bit. Yesterday I took a 2-and-a-half-hour nap. I would have slept longer, but Alex woke me up so that I wouldn't miss dinner. Today Alex is taking a nap and going to Target. I paid my bills and sent a couple of emails, and I am blogging. These things feel like accomplishments, and I have to wonder how I will manage when I return to the pace and intensity of work. Maybe it will feel like a welcome change.

Oh, and I already wrote my letter today. I haven't talked about my letter-a-day project since first posting about it in July, but I have kept up with it this whole time. Most days I don't remember to write until bedtime, and those are hard letters to write because by 9 p.m. I am seriously fatigued. Today I wrote in the afternoon, and that was easier and more pleasant. (Thank you, Bill!) I wonder what these letters would look like if I were to put them all together. At the suggestion of friends, I have photographed a few of them, but for the most part I don't even re-read them before sealing them in an envelope and dropping them off at the front desk or in the mailbox down the hill. For all I know, I've written a bunch of hazy, fragmented, and vaguely depressing letters. It's a good thing I'll be working on this project well beyond our time here. Then again, I may remain hazy, fragmented, and vaguely depressed until next July. Apologies in advance.

Writing these letters has helped me to realize what a chore compulsory letter-writing must have been when people had to write letters daily or almost daily. But it has also proven to be meditative and enjoyable. Someone told me a few months ago that meditation does not have to involve sitting in the lotus position and chanting, that it can be anything you do to bring focus and quiet to your day. Writing letters does that for me, and unlike any meditation I've ever tried, I am actually doing this regularly. And what's cool--what's really healthy, probably--is that the form of a letter dictates that one not only write about oneself. So while I devote a good chunk of each letter to writing about whatever is happening in my world here at Shriners, I also think about my correspondent's world and wonder and ask questions about it. These are good practices, and not only while you're sequestered in a hospital.

Aside from our long-term and repeat visitors (my mom, Bill, Jenny, and Leon), we've had visits from two families of kids Vivian's age who were in halos earlier this summer and have the same type of growing rod that Vivian will have. It was a comfort to meet these families and to see these kids, both of whom have recovered from the surgery and are busy being kids. One of the kids was kind enough to show us her back, so I now have an idea of what kind of scarring we'll be faced with, and both sets of parents were very open about their post-hospital experiences. For the first three months after the surgery, Vivian's movement will be more limited than it will be later on because her bones will have to heal, and we don't want to risk displacing the rod or fracturing a vertebrae. I hear that the first 10 days post-op will be the toughest: there's the pain and healing you'd expect, plus the added factors of weakened neck muscles from the halo, and seriously altered equilibrium because of the rod and the correction of the curve. After that, things appear to ease up significantly, and our doctors have assured us that while Vivian will not be allowed to go on the monkey bars or a slide or experience 4Gs on an extreme roller coaster, she will be able to go about her kid life fairly normally. After talking to one family, I considered requesting a course release for fall semester, but Mike Pond urged me not to do that. He said that the rod should make our lives easier, not harder, and that we should live our lives. Vivian will probably be out of school for a few weeks in September, but after that...game on.

This is not to say that I will not be very careful with her. I know that I will be. So will Bill and Alex be, and whoever else is lending a hand. But I'm hopeful that Vivian will respond well to this surgery. Fingers crossed, everyone. As my friend Laura taught me to say--she got it from the Wiccans--Hold us in the light.

I'm sorry to go on at such length, but there's a little more that I want to share. You know how in my last post I compared our stay here to being in a low-security prison? The similarities are mounting. Last night was craft night, and Vivian and her pal Taylor (also in a halo) assembled monkeys, rabbits, and lambs out of paper and chads. Taylor's mom asked if we could keep the Zip-Loc baggies that the crafts had come in. "You never know what you might need these for," she said, and I agreed. We could make pruno, I thought (and may actually have said aloud). We could pocket a chad and use it for a shiv. 

I kid--I kid because it gets me through, just like the view from our window gets me through.

You know what else gets me through? This place. Shriners Hospitals for Children are incredible. Did you know that they are charity hospitals? We met a woman in the elevator yesterday whose young daughter is here for her second leg surgery to correct a disability she was born with. Medicaid told this family that the surgery would be cosmetic and therefore would not be covered. Cosmetic? This child was in pain and could not walk properly. Enter Shriners. Now this girl has the chance to live a healthy and pain-free life, and the family has not suffered financial hardship in order to get their child the medical care she needs. There are many such stories here. I will be eternally grateful to Shriners (and to this Shriners, in particular) for accepting Vivian as a patient, and to Bill for learning about EDF casting--the late-night internet discovery that led us many years ago to Dr. D'Astous and Mike Pond and Shriners SLC. As hard as this long-term stay is--and it is hard--I am grateful that we are here, and everyone is making us as comfortable as they possibly can. Gratitude, my friends!

I am also grateful to you guys, our friends and family, for your many demonstrations of love and support. We all are. Thank you! I send my love.

Look at the child.

Would it be overly dramatic to begin this post with a reference to the opening line of A Tale of Two Cities, to say of the past few days, “It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness,” &c., &c.? Probably. So I won’t. Yet I did!

Weirdly enough, I’ve been craving nineteenth-century literature since I’ve been here. I’ve told you that this place is a ghost town on the weekends. On our first weekend, I was returning from the kitchen through the twist of hallways that lead you in the back way—because the nice man at the desk makes coffee at 9 a.m., and us long-timers are welcome to grab a cup (the cafeteria being closed and gated until 11)—when I spotted The Mill on the Floss on a cart of free books. It felt like a sign. I haven’t broken the spine of this book yet, but I’ve been carrying it around with me for 12 days. I can’t imagine reading anything contemporary right now. I don’t want to be carried away to somewhere else that I could conceivably be, but I wouldn’t mind spending some time in the English countryside a hundred and fifty years ago. Plus, those people knew bedside care. The women were always tending to someone. Sisters from another (mustachioed) mister.

Over the past few days I’ve had to confront the seriousness of Vivian’s condition. I’ve realized that the five years of castings and braces had given me a reprieve, allowed me not to dwell on that fact, because if she’s been constricted she’s also been free. She’s been a kid. But here I am in the center of the place that before I’d only just skirted the edges of.

You might have heard me describe progressive infantile scoliosis like this: “It’s like the adolescent-onset kind, only more serious because the twisting and curvature of the spine as the child is growing can affect the development of the heart and lungs. If untreated, it can lead to death in early adulthood.” You see, I know that it’s serious, I have always known, and still I have felt angry with the doctors for making Vivian endure the halo and for keeping us all here for over a month. I have been upset that we only just recently learned that it will take some time for Vivian to recover after surgery—she’ll have to learn anew how to balance and move her body—and that she will not be able to ride a giant roller coaster or become an Olympic gymnast, her opportunities limited and her only 7. I have compared our experience here to being incarcerated, only in the nice kind of prison, like the one Martha Stewart went to, where she had plenty of time to crochet ponchos for other inmates and might have been allowed to touch the people who came to visit her.

But all of this has to be. It’s been determined not by the docs but by Vivian’s DNA. That is the hardest thing to remember, to fully realize. The doctors are helping her in what is literally the best way possible in 2014. It’s a kind of miracle that 13 lbs. of weights, two pulleys, some rope, and 6 screws are pulling Vivian’s back straighter as I write, and more of a miracle that she is racing around this place with no pain and in very good spirits. I’m watching all of this go down, and I’m realizing that my daughter has this serious spinal disorder, and that she’s going to have many surgeries, and that her spine will never be straight. I’m realizing that she will probably be very small, and I’m worrying about how other people will treat her down the road. And then I’m thinking, this is Vivian; she is terrific, and she has family, and she has friends, and she has spirit, and this is her life, her “one wild and precious life.” It’s fear and anger and wonder and gratitude and love, you guys. That’s the soup I’m swimming in.

The last time Vivian, Alex, and I were in a hospital for a month, Vivian was recovering from esophageal surgery and the event—superior vena cava syndrome—that almost killed her. One night, a NICU or surgical resident couldn’t get a good blood pressure read on her, so he ordered a blood transfusion. It was to be her second. I was alarmed, and I objected, and I asked him why it was necessary. She was only three months old. Just as he began to explain, Vivian’s surgeon walked in. It was nighttime, and he always visited before he went home. We told him what was going on, and he walked over to Vivian, so tiny and attached to all manner of tubes and wires, and he took her blood pressure. It was normal. He turned to the resident and dressed him down. (The poor guy was mortified; he never made eye contact with me again. For all I know, he quit the program after that. It cannot be easy to be a resident.) I remember what the surgeon said: “Look at the patient.” What he meant was, Does she look like someone who needs a blood transfusion? Machines can malfunction. People are reliable sources of information.

I think of that line often, only I say, Look at the child. There’s the diagnosis, and there are the surgeries forthcoming, and there are the possibilities of complications, and there are the stories the other parents here tell me about their children, stories that terrify me, and there is the child, my child, our child. And she is smart and beautiful and resilient and strong and scared and homesick and a little angry. What does she need right now? Right here? That is what I focus on each day in order not to lose myself in what might be or could have been.