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.

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.

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 1^st 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!

Photos and stuff

I didn't get much sleep last night because I spent the night in Vivian's room. A nurse comes in every two hours to check on her, and while Vivian doesn't wake up during these checks, and the nurses are really quiet and very quick, I'm a light sleeper, so...today was caffeine-fueled, to be sure. I am at the Ronald McDonald House now, and although I should turn out the light, this blogging is too therapeutic to skip.

For the first time tonight I helped myself to some of the free food available to me here at Ron McDon. As my heating pad was in the microwave, I checked out the leftovers fridge and found just what the doctor ordered: two Kraft singles and a slice of bread. Just then it was heaven to me, better than anything Whole Foods dished up yesterday and without the attitude. Thank you, Ronald McDonald House!

Vivian had another good day although she was complaining of discomfort at bedtime. It's hard for her to fall asleep in a bed that's at a pretty sharp incline while she's pulled upward up by an apparatus attached to her head and anchored by weights. In the daytime, though, it's a sight to see her cruising around on her walker, and I do mean cruising. She gets a lot of attention as she scoots around the hospital and approximates zero-gravity, and, a performer at heart, she likes the audience approval. The docs and nurses and other parents tell us stories about overconfident and dangerously acrobatic kids flipping the walkers over and crashing to the ground, so I'm constantly running after Vivian and cautioning her to slow down on the turns.

Here she is, levitating. Safe enough.

Today the physical therapists added another pound to her stack of weights. Each weekday they will add another until she maxes out at 15 lbs. If you're a 35-lb kid, that's a lot of weight to have suspended from your head. Right now she's at 6 lbs. Whenever I think about this ritual, my mind turns to Giles Corey, the Salem man arrested for witchcraft who, in protest of the "trials," refused to plead guilty or not guilty and so was sentenced to death by pressing, which means that he was crushed by rocks. Defiant to the end, his last words reportedly were, "More weight!" Giles Corey was a badass, and so is my daughter.

More weight!

I'll bet Giles Corey didn't have one of these, though, or maybe he did and that's why people thought he was a witch:

It's a noon box, decorated by Vivian before we left Tacoma. Every day at noon, we check inside, and there's a surprise for her. Sorcery!

Today there was a lollipop inside. Vivian found a place on her walker to stash it:

Finally, I thought I'd share some pictures of the grounds of Shriners to give you an idea of what we look at every day.

Here is where we eat lunch:

Here is a little bench that we walk to. It's surrounded by trees and plants, and no one is ever around.

This photo gives you a sense of Shriners' location in the hills. That's all of Salt Lake City below:

We can see the mountains, too:

And this is our room from down below. I like that red tree a lot.

Well, it's quite late now, so I will say goodnight to August 4th and to anyone who happens to be reading. Oh, and please forgive me for being inconsistent with my responses to texts and emails. I appreciate your notes so much, but very often I cannot respond immediately and then am too tired when I've got a moment; also, most of the day I'm limited to my phone's 3G, which is fine for checking fb but lousy for writing emails. I'm all thumbs.

Good night.

Midnight Run

Today I found the rudest Whole Foods in America. You cannot believe how these people couldn’t get over themselves. I’ve never been the victim of more eye-rolling and exasperated huffing in a 15-minute period of time than I was when I went out to pick up a couple of salads, some soup, and some g-d Marseilles soap. One guy pretended not to see me so that he didn’t have to hold the elevator doors for me. Guess what, guy? I got in anyway. A woman with her daughter looked affronted when we turned the same corner simultaneously and nearly bumped into each other. When I saw her look of disdain, I had the impulse to say, “My daughter’s in the hospital right now!” I caught the words before they left my mouth—not my greatest skill—and I’m glad I did because I would have seemed like a nut job to her, the indignity she suffered from our near-collision made all the worse by my insanity. I’m not even sure what I meant when I thought it. I guess I was thinking to say, Give me a break, huh, lady? Just a small effing break.

So that was Whole Foods. The salads were good, though, and I ended up spending $90 on things to make us feel more comfortable here: the soap, some natural shampoo for Vivian because we have to keep the pin sites clean, and I don’t want her skin getting battered by sulfates and god knows what else, some parmesan and white pepper popcorn because yum, some fruit, a papaya body wash for Vivian, also natural, because of the sulfates and because she has to shower while in traction and so she might as well smells sweet for the effort, some gruyere and rosemary crackers, a frozen mac and cheese, some Annie’s bunny cookies, a box of Graham crackers and two packets of Justin’s chocolate-hazelnut spread, some blueberry kefir, and some Emergen-C because you never know.

She is doing quite well, my girl. Today we played two games of pool, as in billiards, and we kicked around a soccer ball a little—all of this in the rec room. We ate lunch outside in the shade, which has become our habit, watched more of The Muppet Show season 3 (also our habit), and played a video game that Vivian absolutely loves: Leo’s Fortune. Truth be told, she played the game for about four hours straight. At the advice of a friend whose son was in halo traction for many months, most rules are lifted during this period. You want to watch hours of TV? Ok. You want to play a video game obsessively? Sure.

While she does these things, whatever they are, she wants Alex and me to be with her and fully attentive. And we do this for her. It’s intensive parenting, very tiring but also a gift of sorts. I am always leery of wishing time away, which is why I tended not to wish us onto the other side of this experience before we started out. I think, What if whatever’s on the other side is not as good as what’s in the middle? and so I try to be present in the here and now. To do that I also have to banish worry, which is another kind of wishing, and that’s very hard for me to do. So I’ll stick to the facts. Vivian is asleep as I write this. She has slid a little way down her bed, which is at an angle. I can see her silhouette, including the halo, and you know I’m not religious, but it reminds me of a crown of thorns. Mostly when I look at her I see Vivian, and she is so lovely and vibrant and interesting, and sometimes I notice the halo, and I get frightened, not of her or of it but of the fact that it’s attached to her and that she needs it to be attached to her. Her spinal curve is 115º. She needs this treatment and she needs the surgery at the end of this month, and she’ll need others. My poor little girl, I think, and then I stop myself because that doesn’t quite work. She doesn’t seem poor or little at all. She is just my girl, and she’s doing this marvelous thing, and I am with her, and so is Alex, and so will others be, and so are all of you in spirit.

We have gotten word that another girl will be admitted tomorrow, and she will be placed in a halo too. I can tell that Vivian feels proud and excited that she will be able to help the girl out. When we talked about it to our night nurse, Vivian got this expression on her face that I’ve only noticed since we’ve been here. It’s hard to describe; I wish I could photograph it. I can tell she’s thinking things that she’s not telling me, secret things but good things, like she’s been pleasantly surprised.

No pictures tonight because I’m sleeping in Vivian’s room and have to sneak out to access the wifi long enough to post this entry and then get right back. I’m wearing a nightgown that I have no idea why I brought—it’s practically sheer, but not in a sexy way, more like how a grandma’s housecoat might be threadbare from decades of laundering. So I’ll have to put on my yoga pants under it and my Bradley Beach t-shirt over it in order to leave the room. The nightgown I’ll just let billow out in between the top and bottom. I mean, really: the place is deserted! Tomorrow I will share some images, but not of this. I promise.

Day 3

There are crickets here. I notice them when I leave the hospital at night, and I'm reminded of New Jersey summers. I used to fall asleep to the sound of crickets every night in the summer, and I didn't realize until I heard them again that I'd been missing that noise all this time.

Leaving the hospital is strange. It doesn't feel right because Vivi's up there, and as I head to the car I'm widening the distance between us. She sleeps at Alex's half of most weeks of the year, but this is different. Even so, I continue. I make the short drive to the Ronald McDonald House because I know it will do me good to sleep in a real bed, and then I'll be better equipped to help Vivi through tomorrow. It also allows me to write these updates, which help me to process and to let folks know what we're up to.

The parent bed in Vivi's room. 

By day it's a chair.

Today was a good day. While Vivian woke up feeling ill, she recovered within an hour, and we managed to give her her first shower. Even better, we had visitors! My cousin Jenny and her husband Leon brought us a few items from the grocery store--tissues, tea, that kind of thing--and LUNCH! The lunch was especially well received because, as we have learned, the hospital is a ghost town on the weekends. Vivian is the only patient on the floor. There are three other families staying in another part of the hospital, and there are two nurses on duty and a volunteer at the front desk and a single cook somewhere in the kitchen, but that's it. Honestly, it's like being in the Overlook Hotel, only without the psychopathy. And snow. There's no snow. Oh, or a hedge maze. Or twins.

Anyway, Jenny and Leon brought us a feast--sandwiches from Whole Foods, three bags of chips, lemonade and Arnold Palmer (the drink, thank goodness, 'cause that guy can eat)--and the five of us dined outside in the shade. It was lovely. Vivian was proud to show off her walker and wheelchair skills, and she gave Jenny and Leon a tour of the hospital. When we went into the cafeteria, the nice woman who works there gave her a KitKat.

Jenny and Leon went above and beyond the call of familial duty and stayed with us for FIVE HOURS. Thank you, cousins! You made this day a pleasure and helped it to pass quickly.

I'd be remiss if I didn't mention that we made the acquaintance of Alison, a 15-year-old girl who unceremoniously cruised into our room on her power-wheelchair, and introduced herself to us with the help of a talking tablet. While Alison cannot say much, she is wonderfully expressive and very funny. We spent quite a bit of time with her today; she even helped us to decorate a calendar for the wall in Vivian's room. And she taught us about boy bands and teenage heartthrobs. (By "us" I mean the grownups because somehow Vivian already knew.)

When Jenny and Leon were saying their goodbyes, Vivi said, "I wish I could go home." But then a bit later when the night nurse asked her if the halo is as bad as she thought it would be, she said it wasn't. She's an amazing person, my girl. She's working through this in her own way, and I'm grateful that I am able to be with her and to help her along. I know Alex feels the same.

When our visitors left (with last night's hot pot), Vivian, Alex, and I ate leftovers and watched more of The Muppet Show, season 3 (from 1978). Remember Leslie Ann Warren? Remember Liberace? Pearl Bailey? Alice Cooper? Danny Kaye? They were "it" once, and in Room 11 they are once again enjoying the limelight. And that pretty much ended our day. We helped Vivi from her chair to her bed--it takes us plus a nurse to do that--and we read stories and sang songs. And then I went outside and felt the warm air even though it was night, and I heard the crickets.

Ups and Downs

Greetings from the Ronald McDonald House. I have taken a short break from the hospital to retrieve some odds and ends I'll need for my night in my daughter's hospital room and to write a quick blog post. (The hospital rooms have no wifi, and while the rec room does, it's seldom quiet enough in there to write.)

Today went well overall. Vivian used her wheelchair and her walker, and she made two trips to the cafeteria and two trips outside. It was a mild day here, warm and breezy, so it did us all some good to sit in the shade and enjoy the weather. Vivian has shown herself to be a quick study of the wheelchair. Her powers of steering and self-propulsion are impressive! Even so, by the end of the day she was tired of sitting around but didn't want to lie down or walk, either. Eventually, the strain of the last few days caught up with her, and she broke down a little. We have had times like this before, of course, and I was anticipating it now, but, even so, it broke my heart. This is one of the hardest things, isn't it? when your child needs you so desperately and you are able to be strong for her, to get her through it, and then you are left with your own despair.

I tried to call a couple of people, but no one answered. The irony! I can't tell you how many messages of support I've gotten over the past couple of days, and then when I do try to reach out...no one's home. I'm not upset about it, only amused. It figures!

So I'm writing this blog entry.

My room at the Ronald McDonald House is really nice.

As you can see, there are two beds, and there's a couch in that back corner, a desk a bit closer, and out of the frame but next to the desk is a dresser. There's also a closet and a full bathroom. They call Ronald McDonald House "The House that Love Built," and as hokey as that sounds, you can feel the good-spiritedness and generosity and thoughtfulness that went into building this place.

Tonight we ordered Vietnamese food for dinner because we knew Vivi would like the pot stickers, fried tofu, and sticky rice. She did. For ourselves, Alex and I ordered lettuce bowls and some chicken-noodle salad. We should have stopped there. But, not knowing how huge the portions would be, we ordered a hot pot, too. Turns out, the hot pot alone was enough to feed 4 people (out of gigantic, non-hospital-issued bowls). We do not have giant bowls, and we are only two people. Said hot pot also turned out to be $35. Aargh! So here we are, in a small hospital room with a small fridge, and enough Vietnamese food for a family of 8. We also spent $75 on dinner. Tomorrow my cousins Jenny and Leon are coming to visit, and we will give them the gift of an untouched and certainly delicious hot pot to go! I hope they like tofu.

Vivian is having a tough time with the halo; conceptually and physically, it's not an easy thing to get used to. Sometimes, like when we were helping her to get x-rayed this morning or when I was cleaning the pin sites this afternoon, I feel faint myself. It's a lot, y'all--enough to make me assume a Southern colloquialism.

Well, I would like to write on and on, but I need to gather my things and get back to Miss Vivi. Lots of love to whoever's reading.