The note currently on our front door, courtesy of Annika.
Welcome back to the place where I keep intending to write something, but somehow never get around to it! Unless you are a villain, and then DO NOT WELCOME!
Annika's EBV-PCR came back normal with her last blood draw, the first normal level in months. At Annika's transplant clinic visit in May, her main liver doc pronounced that Annika "Looks great! Better than we could have imagined!" She also told me that she thought the whole diarrhea-with-streaky-blood, combined with the high EBV-PCR would probably just "blow over." I looked at her doubtfully, since we've rarely had worrisome health trends just "blow over" with Annika.
But blow over it did, and then I had to admit that, actually, not every health scare with Anni turned into high drama, even if my high drama selective memory has left me a bit of a pessimist.
At the same visit, Dr. Alonso also pronounced the tilt-a-whirl "a bad idea," given that Annika is now on coumadin. I had told Annika the same thing myself a few days previous, when we had driven by a traveling carnival being set up in the mall parking lot.
"But I can wear a helmet to protect my brain!" she countered.
And I said that I didn't think that would make any difference, but, because I could tell she doubted my reasoning, I told her we could ask her doctor the next time we were in Chicago.
Annika, I guess, trusts the authority of doctors in the same way that kids in other families learn to give up pestering their parents with the hard questions once God is invoked. Not that we're raising our kids to be in some kind of weird cult of the medical. We don't have any secret altars to the holy trinity of Dr. Superina, Dr. Alonso, and Dr. Whitington in our closets. (Although I do believe that Annika would happily paste the walls of her room with icons of Nurse Joan of the Cool Shoes, Nurse Ilana of the Happy Smile, and Nurse Beata of the Substitute Mother Figure.)
But in the same way that other parents answer hard questions with "God did it!" or "It's up to God!" or "Because God says so!", we've exposed the limits of our knowledge and power as parents at the borders of medical land. "Well," we hedge, "we'll have to ask the doctors." And most of the strange, hard-to-understand stuff in her childhood has been laid at the feet of the doctors, who (as we've explained to her) have saved her life over and over again.
So it was that, when Dr. Alonso declared the tilt-a-whirl off-limits, Annika gave up any hope of riding her very most favorite ride ever again. She sobbed quietly into my shirt, her face pressed into my breasts like she had when she was a baby, snuffling around for comfort.
"But," Dr. Alonso continued (and I wasn't sure if she was talking to herself or Annika or me), "not riding the tilt-a-whirl doesn't really constitute a genuine quality-of-life issue."
That phrase, "quality of life issue," stuck with me on the long drive home, because it was so official sounding, like Dr. Alonso was reviewing in her head the discussion the transplant committee had had before deciding to take the chance of re-transplanting Anni. I wonder if those meetings are difficult, and what activities are listed in the column that determine whether a patient's quality of life post-transplant justify a listing or not.
I imagined a checkbox next to "can ride the tilt-a-whirl," and didn't know whether to laugh or cry at the absurdity.
I bet Dr. Alonso, as a mother, knew that Annika would have argued passionately with her that not riding the tilt-a-whirl ever again did too constitute a genuine quality-of-life issue.
She probably also knew that, a few weeks later, Annika would declare the giant swings her new, most favorite ride of all time! Way better than the tilt-a-whirl, anyway! Kids, you know, are constantly adjusting what constitutes "quality of life" from year to year, day to day, minute to minute. One day, they'd swear that the sun itself cannot rise until the sock monkey with the heart on his chest is found again (Oh, Frankie), and then, practically the next day, they're begging for a cell phone or the keys to the car.
And, take all that middle-class privilege away, and you'll find kids who will cling just as hard to a doll they've made by stringing two sticks together. Kids create their own quality-of-life standards in astonishing circumstances.
Anyway.
Annika is doing well is, I guess, the point. And she's having fun at an impressive rate for a poor kid (sniff, sniff) who can never, ever ride a tilt-a-whirl again. Proof (photos courtesy of my sister):
mini-coaster (with her cousins)
testing the patience of dogs other than her own
Mud. Still the best stuff, ever.
Over the past few months, Joerg and I have been struggling over a pretty big decision for Annika. We had a neuropsych evaluation done for her up in Chicago to try to determine if Annika has any particular learning difficulties, besides the glaring fact that at 8 she had had barely 1/2 of a year of formal schooling, and that little bit had been given to her brain through a (probably pretty severe) hepatic encephalopathic haze that I'm sure made accomplishing anything like learning pretty difficult.
When she first went back to school, she would bring home assignments on which she had scrawled letters which only sometimes bore the slightest phonic connection to the words she had imagined in her head. We worried that Annika's work was actually worse than it had been before transplant, and wondered if she might have suffered some lasting neurological damage after all the complications before and after transplant.
The evaluating doctor diagnosed Annika with moderate learning disabilities, although he noted that he couldn't be sure that any deficits he noticed would be permanent, or would disappear as Annika went back to school with a liver that could actually filter toxins out of her blood before they could stew her brain.
By the time we received the results from his evaluation, Annika had already begun to show amazing improvement in her work at school. At the private school she was going to, she had two fantastic teachers who had managed to re-integrate Annika into the classroom and help her catch up without isolating her from the other kids. I knew that a significant portion of her progress was thanks to those teachers, who seemed to know just how to motivate her to work without either coddling her or letting her become too exasperated.
But one reason we wanted to have the evaluation done was that the private school tuition was not an easy bill to make each month. We knew we couldn't send Annika back to public school without some sort of support program in place to help her through, though, given that she would be behind kids who were already 1 or 2 years younger than she is (she was an 8-year-old first-grader, a fact that did not escape the notice of her classmates). We wanted to know what problems, exactly, Annika might have to work through, and what the (free!) public options might be.
Maybe it sounds ridiculous, but I was actually agonizing over this decision. At one point, we thought we had worked out a compromise whereby we would send Frankie to the (very good) public school down the street, and keep Annika at the private school where she was flourishing. Frankie, in fact, asked to go to the public school, where she still fondly remembered being brought for show-and-tell during Annika's kindergarten (take-2) year there.
Then it occurred to me that, even if Frankie was perfectly happy with the arrangement at 6 years old, how would she feel when she looked back as a teenager, and realized that she was the public school kid, while her parents scraped so that her big sister could go private?
Back and forth I went, wringing my hands and spinning out ever more ludicrous scenarios of disaster ensuing from either choice.
Until Joerg sat down one day and said, "You do realize that you're freaking out over the difficulty we might have sending our kids to private school?"
Which, before you smack Joerg down for his insensitivity, is really why Joerg works for me. He's a big picture kind of guy, while I'm an obsess over the details, lose track of what's important kind of gal. I'm also the person who doesn't mind spending hours over a craft project that ends up in the recycling next week, or listening with real interest to the stories Annika spins out for hours on end, so my personality quirks aren't always faults. *
And, anyway, he was totally right. It was a big decision to be made, but also a luxury decision.
So we decided to send them both to the school down the street next year, where the teachers we've met are all committed to their kids and the principal has been extremely helpful in setting up Anni's IEP, which basically consists of extra help for reading and math. However, if anyone here in town is reading this, and has a "quirky" kid struggling in the public school masses, I can't recommend Mulberry School highly enough. They worked wonders with Annika, which is no small feat, especially in a classroom that included a child who was learning about the distributive property at the same time that Anni was finally grasping the concept of addition.
Next up, if good intentions actually translate to posting here: the girls very first catholic wedding, my very catholic overdeveloped sense of guilt about the entire world, and Frankie's totally logical and completely awesome take on The Birds And The Bees (I'm snickering right now just remembering this conversation).
* Which, by the way, is why I can tell you that Annika sat at the top of her slide last week and declared, "This is ALL MINE! Behold, I am the left hand of creation!"
Joerg was slightly irritated with me that I took Annika and Frankie to their Grandparent's church during our visit to Kansas City, on the theory that religious instruction for kids tend to be pretty much a form of brainwashing. As a product of that childhood religious instruction myself, I have pointed out that it can't be very effective brainwashing, but I get his general argument. However, if the result of that church visit was to introduce the word "Behold!" to Annika's vocabulary, I would argue that the risk of brainwashing was worth it.
