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!