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.