Friday, August 29, 2014


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!

Tuesday, August 26, 2014


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.

Thursday, August 21, 2014

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.

Tuesday, August 19, 2014

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 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.

Thursday, August 14, 2014

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.

Sunday, August 10, 2014

Break-bone fever, tamales, and crickets

I think we've been here 11 days. Eleven is my lucky number, and so far the day has been good. Coincidence? I don't think so.

My mom arrived last night, and Vivian was beside herself with excitement. It was nice to see her so happy. She showed Grandma all of the tricks she can do in her walker, and there are many. The weight she's carrying around is up to 10 lbs now, so I think she's experiencing something close to zero gravity. Right now she has one leg up on the pool table and is hands-free (a move I patented in the '80s).

Because my mom is here, I was able to catch up on some emails and light work stuff, and I'm also taking the opportunity to write this update. We seem to have gotten through the worst of the disappointment and grief over the change in the surgery date, and many nurses and other doctors have reassured us that if Vivi's surgeon thinks that the delay is necessary, the delay is necessary. I was just having a conversation with the pediatrician here, and she told me that Dr. D'Astous (he's the surgeon) is truly gifted, "an artist," she said. I feel like Vivian is in excellent hands. He's also an incredibly nice man, as I may have mentioned in my last post. Currently he's in Equador on a medical mission. Fingers crossed he comes back!! The humanitarian work these people do takes them far and wide, and sometimes they get sick. One of the anesthesiologists here has had Dengue twice and malaria a handful of times. He's still standing, though, so there's that. (In case you're wondering, he told us that Dengue is known as "bone-crushing disease" or "break-bone fever," and that he's never felt worse than when he had it. Twice.)

I really enjoy chatting with the doctors, nurses, and staff here. You've never met a nicer bunch of people, and they're interesting, too--and full of book recommendations! Science types DO read for pleasure.

Downstairs there is a gratitude board, and families and staff alike add messages to it:

Here is the one that we added on our first full day here:

This one is Vivian's favorite:

And here's my favorite:

Because her hips don't lie.

I mentioned a few days ago that I would write about SummerFest, which happened on August 5th. It was a fun event outside that included games (like the beanbag toss and freeze-dancing), music, a rock wall (which Vivian did not climb), face painting, and prizes. Vivian won a CD of children's music plus a bunch of swag, and she ate popcorn and met a few of the Salt Lake City Bees and their mascot, Bumble. Bumble even danced with her. The child-life staff here do so much to make the kids' experiences as pleasant as possible. Carolyn is the child life specialist who's spent the most time with Vivian. She's helped Vivi to decorate our room and has found lots of fun activities for her to do. On Friday we converted a make-a-bug kit into a make-the-planets kit, so now we've got the solar system hanging in front of our window. Along with the banner from Auntie Joyce and the adhesive flowers from Carolyn and the blinged-out "V" from Arianna and the origami cranes from Alisa, our room is downright cheery.

I suppose the last bit of big news is that Vivian won first place in Friday Night Bingo. Friday Night Bingo is not amateur hour, people. It's the real deal, complete with one of those metal spinning devices for the balls, a volunteer caller who knows his stuff, and games that last a very long time. Each kid gets to play four cards at once, and the competition is fierce. Vivian prevailed with 13 wins, and one of the kids who had fewer wins has declared next Friday a grudge match. We say: Bring it.

Well, I have more to say, but it's 11:30, and around here on the weekend, that means we have to eat lunch before lunch disappears. Last night we raced down for dinner at 4:30, afraid that we'd miss out on Jose's tamales. We did not, and they did not disappoint. Thank you, Jose. Remember what I said about small comforts? The tamales were one of them. Oh! And last night we took Vivian outside to see the Super Moon. She hasn't been outside here at night before, and when she stepped out do you know what she said? "What's that sound?" It was the crickets. She had never heard them before and was captivated. God, I love that girl.

Friday, August 8, 2014

5 more days

As you know if you saw my Facebook post yesterday, our doctor changed the date of Vivian's rod surgery from August 28th to September 2nd. We understand why he did it: he will stop performing these surgeries in a couple of years, and before that time he wants to do a good many of them with the doc who will take over. The doc who will take over is not available on August 28th. A rational decision. Even so, we were crushed my the news, Vivian especially, and me because of that.

Vivian is a smart person. When I told her the news she did a quick calculus and realized the following: 

1) "They've taken away all of my progress. I felt like I was almost done, and now I'm back to four weeks again!"

2) This will put her in Salt Lake City on the first day of school ("I know I wasn't going to be there on the first day, but now I won't even be close to the people in my class!")

3) This will be difficult ("Don't they know I'm just a kid? Why can't the other doctor change his schedule on the 28th? What's more important than getting me out of this halo on time? They don't know what it's like to be attached to something for a month!")

4) This means that Grandma and Auntie Joyce might miss her surgery (they had already bought tickets for the earlier date). 

She said all of this, asked all of it, in the most plaintive way, and she cried a lot. Later in the day we went through it again, and this time she got angry. She cried, sure, but she also kicked her walker and raised her voice. 

I sat there with her and let her cry and rage, and I told her she was right on all counts, and I told her I was just as upset as she was. I also tried to show her the bright side, which I really had to reach for, but perhaps it's true that the delay will give her soft tissue five more days to stretch, and that that might give us a slight improvement when the metal goes in. And it's certainly true that it's in her best interest that the other doc be there. A nurse reassured her that her surgeon would never make such a change unless it were in her best interests--and this is true; he's a lovely man who has helped Vivian avoid surgeries all this time until now. Another nurse told her that everything happens for a reason. You know that I hate those sayings; I simply don't believe any such thing is true. There's no "reason" for 200+ girls having been stolen from a school in Africa and sold into sex slavery other than depravity, inhumanity, evil, hatred, cruelty, self-interest, and greed. There is no light to be had, no silver lining to every cloud, or if there is, I don't care to point it out when the cloud is so very, very dark. There's inhumanity in that

Even so, I let the nurse's assurances wash over Vivian and me. Earlier that day I had given Vivian my own version of how the universe works, and it wasn't so different: sometimes we suffer, and it's a very long time before we can see how the suffering made us stronger or better. (I also believe that sometimes we suffer, and nothing good comes of it, ever, but I don't want that to be the case for Vivian.)

She asked what's been hard for me. I told her that I haven't had to spend time in hospitals or casts like she has, but that I had a mean and frightening father. I told her how scared I used to be and for how long, and that's why I won't see him even though he lives in our very town. I told her that my father's behavior taught me what kind of a mother I wanted to be, which is a great mother, and I told her I think I am a great mother to Vivian. I told her she is lucky, that she has good parents who love her and protect her, who would never try to scare her or hurt her. I said, "Five weeks is a long time to wear a halo, and 25 years was a long time to be afraid of my dad." That soothed her somewhat. She wanted not to be alone. She wanted to know that other people have had to bear what feels unbearable. She is only 7.

My cousin Jenny came to visit yesterday, a bright spot in a gray fog of a day. She and I went for a short walk, which did me some good. Jen delivered a beautiful china tea set that her mom, my Auntie Joyce, got for Vivian. Apparently my mom will bring homemade cookies when she visits--she arrives Saturday!!--and we'll have a tea party. Vivian loves the tea set. It has fairies on it, the real ones, not the Disney version. It is beautiful and civilized, and so are we now.

They put Vivian's bed up on blocks in the morning because she had hit the 9-lb mark (today she'll go up to 10), and she was being pulled up too far toward her headboard at night. Now the bed looks like this:

If there's no photo there it's because the wifi is so sketchy that my gmail will not even open, so I cannot retrieve the photo. Good times.

One thing that is driving me crazy during the hospital stay is that I can't keep track of all of our stuff. Yesterday when my brush wasn't where I thought it was, and I had to walk back and forth between the parent room and Vivian's room a few times before locating it--and all I wanted to do was to dry my hair--I lost it. I punched the bed five or six times in a fit of frustration. And, of course, in doing that my hand clipped the edge of a beautiful beaded necklace our friend Sheila had made for Vivian, and beads flew everywhere. I sat on the floor and cried, and then I crawled around picking up beads. I found them all and will get the necklace repaired when we get home, but now I have to tell Vivian what I did, and it's more bad news. It's the little things that lift our spirits, and it's the little things that make us fall apart. And this is because of the very big thing we're contending with that we're powerless to do anything about, not only the halo and the surgery rescheduling but also Vivian's diagnosis of progressive infantile scoliosis. It is a tough disorder, the most serious of the spinal problems, according to Mike Pond. And my little girl has it, and we have to do all of these things, and there are no reasons--it's idiopathic--or guarantees, only best efforts and hope. 

Maybe today will be better. But my gmail will not load, and so I cannot include pictures. This is the kind of small snafu that makes me want to scream. How taxing can it be on a wifi system to load gmail? How is it possible that I cannot so much as share a photograph right now? If you were here I would show you the bed, and I would show you how we rearranged the room and how cheery the window looks from the outside--I posted the wrong window the other day--and I would introduce you to Vivian, and we would play a game or go get breakfast.

Wednesday, August 6, 2014

My 13-hour Blog Post

When I went down for coffee this morning, I ran into the family from Peru we’ve gotten to know a bit over the past week. It was only 7 a.m., but they were showered and dressed, and since they were also in the lobby it could only mean one thing: they were going home. Released! We didn’t talk much because I don’t speak Spanish, but the kids played together and the parents were really nice; you don’t need conversation to figure out that kind of thing.

At home I do my best writing in the morning, but here I tend to blog at night. I can see the difference in the finished product: my posts get the message across, but they’re pretty rough. Last night, though, I was too exhausted to write. I didn’t even have the energy to call Bill, which I usually do after Vivi’s asleep and before I crash. I don’t know what it was about yesterday, but it wrecked me. This morning as I write I can see why I’ll want to stick to nighttime composition. To write these two paragraphs has taken me about 30 minutes because I have been interrupted 7 or 8 times. Vivi’s watching a movie, but still she has needed some cereal and then dropped the cereal on the floor, and the nurse has come in with medication, and the nursing assistant has taken Vivi’s vitals, and the physical therapist has come in to check the weights, and Alex has texted about picking up a bagel for Vivi, and Vivi has asked, “Where’s Daddy? I’m hungry,” and then she’s wanted cuddles, and then her docs came in to visit her. Let me tell you, medical professionals and hospital support staff hit the ground running early, every day, and so do we.

Speaking of medical professionals, Alex and I had a powwow with several of them in yesterday’s care conference, a meeting at which the people who oversee the many elements of Vivian’s care provide us with information and answer any questions we might have. Everyone at the meeting was open, informative, and supportive (like all the people who work here); even so, I think that the care conference is part of what sapped my energy yesterday. It seems that whenever I get new information about Vivian’s condition or treatment, it registers as a sucker-punch, and I feel dazed and a little angry, and I want to cry. And then I turn it around in my head for hours or days, and then I come to terms with this new reality.

Here’s what we learned: We will be able to return to Tacoma very shortly after Vivian’s surgery, so, like, by September 1st we’ll likely be home. (Hooray!) But it will be another four weeks before she can return to school. What? What are we going to do? Here are the questions that reeled through my brain as the care conference proceeded: How will I break this news to Vivian, who loves school and misses her friends and teachers? How will I go back to work while I’m also helping my daughter to convalesce?  Will I need to take federal family leave and so go without pay for that time? If I do that, who will teach my classes? And what will become of my evaluations? I’m up for review in January, and these evaluations “count,” as they say. If I do go back to work, who will stay with Vivian, and how will I manage to care for her while handling a full slate of courses and all the work that entails? Will I sleep? How am I going to do this?

We also learned that Vivian’s growing rod will probably be lengthened every 6 months, not every 9 as we had initially been told (or remember having been told). That puts us back here in late February, by my calculations. Alex will be embroiled in legislative session at that point. I’ll be not quite at mid-semester. Again I wonder, how will we manage? What will we do? How long will our hospital stay be then, and what will Vivian’s recovery be like?

It occurs to me that many families whose children have extraordinary medical needs have one parent, usually the mother, who does not have a job (by which I mean, a paying job). I know this from the research I did to write that op-ed I shared on Facebook last week. These families must survive on one income, of course, and when travel and prolonged hospital stay are factors and they have other children, even stay-at-home moms must get very worried about how to manage it all. I have only Vivian, and that simplifies things, but the incompatibility between being a primary caregiver and a worker is enough to make me nearly despair of being able to pull it off.

Then, as I tend to do, I rethink that language: Really? Does this situation call for despair or anything close to it? No. It will be very difficult to negotiate these frequent surgeries, but it will not be impossible, and we’ll figure it out. I look to my left and see my kid wearing her halo, and I think, really, Tiffany, you don’t have it so bad. These treatments are the best options for Vivian, and I am beyond thankful that we get the wonderful care that we do here. We’ll make all of it work, but, boy, it was a lot to absorb yesterday.

We have a provisional plan: I’m going to stay home with Vivian for the first two weeks of the semester, as planned. Alex will return to work earlier than he had expected to. We’re going to ask my mom if, rather than come to Tacoma immediately upon our return from the hospital, she can come during my first week back on campus. (Fingers crossed on that one.) The week after that, Alex will take a leave from work to make up for the early return. And in this way we will get Vivian back on her feet and back to school. Ask me later about February.

The other realization I’ve had since being here, and it was corroborated during yesterday’s meeting, is that our lives will change once Vivian has a growing rod. Things that she loves to do, like ride roller coasters and climb on playground equipment, won’t be available to her anymore. Most of the information we received about these limitations we got from another parent, so rather than dwell on them here and now, I will wait to hear from Vivian’s docs specifically what she will and will not be able to do with a growing rod in place. I understand that the thing to do will be to emphasize and get her involved in what she will be able to do. We’ve got that covered. Even so, we need to figure out how to break the news to her, and we need to be able to support her as she (rightly) mourns the loss of a certain amount of freedom. I am not a fan of rushing to the positive. Sometimes things suck, and I believe that it’s ok—and healthy—to acknowledge that and to feel those feelings. I know that we will eventually accommodate ourselves to our new normal, and I also know that it will be hard at times.

Speaking of hard, evenings can be tough around here. By then, Vivian, Alex, and I are all fatigued, and Vivi tends to dwell on how much she misses home or wishes she didn’t have to wear the halo. She also has a hard time getting comfortable in bed, as you can imagine. Last night was made more manageable by the gift of a Hello Kitty blanket from Caroline, the child life specialist whom Vivian adores, and by the physical therapists’ tinkering with the angle and height of the bed. Tonight we opened a care package from our friends the Wades, and Vivian pretty much flipped out over receiving a golden ticket in her chocolate bar, Willy-Wonka-style. Small comforts have been getting us through, as have the support of our friends and family. Let me tell you: a man who has worked here at the hospital for 25 years told us he has never known a child to get more mail than Vivian does. While he occupies a position of some authority at this hospital, he often hand-delivers her mail because he’s so tickled by the phenomenon. Thank you to everyone who has written or sent a gift. I have not yet been able to acknowledge them all properly or even at all, just as I am miserably behind on emails, but every note, every letter, every gift, every email, every Facebook comment goes a very long way around here. Thank you, thank you, thank you.

My writing of this post was interrupted yet again by, well, a hundred things, including my own shower, and then lunch, and then dinner. If you can believe it, as I write this paragraph it is 8:30 p.m. This is how our days go! I have to rush back to the room because it’s bedtime. Tomorrow I will write about SummerFest, which was a fun outdoor festival the hospital sponsored today, and I’ll post a few pics. Good night for now, and thanks for slogging through such a rambling update. Love!