One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Wednesday, April 26, 2006

zoinks!

Health news: Annika is doing well. The diuretic has pulled off the fluid that left her so swollen, and she's back to wearing her regular clothes (I had to go buy her some 10/12 shirts to cover her tummy a few weeks ago). She does still approach the world belly-first, poking her rounded tummy out in front of her in a wildly exaggerated manner, like Shaggy after too many Scooby Snax. But, overall, she's feeling pretty great. The girls and I have been spending hours in our yard together. We added a butterfly garden behind the playset, which sounds like an incredibly kid friendly idea until you take into account the fact that Frankie shrieks like a horror show teen queen at the sight of anything vaguely bug-like. We had a little snack break at the zoo recently, which attracted a few flies. To avoid Frankie's banshee howls, I had to fan my arms in front of her non-stop to ward off any flying creatures. I can always hope that butterflies will be more magical and non-threatening to her, but I'm not holding my breath, given the fainting spells over the sweetest little ladybug that happened into our house last week. frankie at the park, with treasures Our trusty Black & Decker electric mower stopped working last week. A quick check on-line to estimate the cost of getting it going again revealed that our mower had actually been recalled nearly 4 years ago for a malfunction that could damage the mower and cause damage to person and property. Exactly what kind of damage wasn't specified, but my mind went busily to task constructing all sorts of nightmarish scenarios involving flaming clothes and fire detectors with dead batteries. After having Jörg replace all fire detector batteries,* we tried to call the manufacturer, only to miss their closing time by 3 minutes. It was Friday, and I was pretty sure that the grass would be high enough by Monday that I would have to keep the girls inside, for fear of losing one of them in the turf grass jungle. So I borrowed our neighbors' gas-powered lawnmower. Then I spent the rest of the day with a woozy headache from breathing in all that stinky exhaust. Plus I couldn't keep my hands still, as the memory of that tremoring lawnmower handle still worked the muscles. I know that probably 95% of my neighbors here in town use gas mowers, but I still have to say, "Yuck. Why?" Afterward I felt like I was in some suburban reenactment of that famous scene from Apocalypse Now: the one where the soldiers are surfing on the beach while the crazy captain?/sergeant? paces with his cigar, the one who later watches the helicopters bombing the jungle and inhaling deeply says, "I love the smell of napalm in the morning." Except for in this version it would be a bunch of suburbanites drowning out the birdsong, and the line would have to be, "I love the smell of gasoline on the weekend." Since we couldn't wait the weekend to find out if the malfunction listed in the recall notice was responsible for the breakdown, we decided to look into reel mowers. Our lawn is already bigger than is recommended for electric mowers, but I always worked around this by just mowing the front one day and the back yard the next. So I had my reservations about a reel mower, which is usually recommended for even smaller sized lawns. Jörg, the European raised in the land of postage-stamp-lawns, thought a reel mower was a great idea from the very beginning, but since I was the one doing the yardcare, I pretty much got veto power on the issue. But even the corded electric mowers were expensive (the rechargeable ones were completely out of question), and I didn't relish having to swing an electrical cord over my head every time I changed directions. I could already see the girls trying to teach themselves to jump rope with the fun, bright orange cord as I labored away obliviously. So I flexed my arm muscles a few times, just to reassure myself what a powerful woman I really am, and we bought a reel mower. I can't believe that we didn't discover the pure one-with-nature joy of reel mowers sooner. The backyard, with its scraggly, struggling grass is super easy to cut through, with no repeat passes necessary. The front lawn has a bit of a slope and the grass is in better shape (no shade trees), so I have to go over the grass twice and my arms feel all rubbery spaghetti afterward (except for not skinny like spaghetti). But that extra work is more than made up for by the completely entertaining silliness of watching the grass fly up in the air as I push the mower along. When I get going really fast, the grass shoots up in the air just like hair in a cartoon with a barber holding scissors in both hands and working too fast for the eye to follow! Or just like when Edward Scissorhands did lawn work! Fun! Best of all, though, is that I can cut the grass and still conduct conversations with my girls. Frankie will go off to entertain herself happily in the sandbox while I'm working outside, but Annika begins to go into communication withdrawal if she's out of conversational contact for more than, say, 45 seconds. Although having to stop and restart an electric mower to hear a question is not such a big deal, it did get kind of annoying. Now we can continue chatting while I trot along, happily Edward Scissorhands-ing my grass. The rest of the week has me composting the flower bed out front, planting zinnia seeds in the bare spots behind the play area, and planting tiny redbud trees for some much needed patio shade. If you're looking for me around town, I'll be the woman with brown-rimmed nails.** *Jörg has proven himself wonderfully responsive to my brain's feverish overworkings. When I told him that I had had repeated nightmares in which our car went off a bridge into a river and I couldn't open the windows, he bought and installed one of those windshield breaking tools for my car. I think it's great that he works to structure our waking lives to ease the stress of my sleeping life. Or it could be that I always sit him down and recount my bad dreams to him in painful detail. I think he would do nearly anything not to have to listen once more to any of my dream stories, which I usually intone with a dramatic air. I probably should stop watching Medium. **You'd think I'd learn my lesson and wear gloves in the garden. Last year I was digging by hand in the raised flower bed out front and stuck my hand right into into some excruciatingly fresh dog doo. Thanks, helpful dog, but I prefer my soil nutrients a bit less odiferous.

Wednesday, April 19, 2006

return

So where have I been? Not curled up fetal-style in a corner somewhere muttering to myself, "My child needs a third liver transplant...my child needs a third liver transplant." Oh, no. But I have had to give up my nightly glass of wine, even if I did read that it helps ward off memory problems as one grows older. The wine, combined with PMS'ing in a flood of hormones reminiscent of my teen years, together with Oxygen playing extremely sad movies after everyone else has gone to bed, has meant several nights of, shall we say, emotional vulnerability. Then I awake the next morning with eyes so puffy that Annika looks at me like, "Who are you and what have you done with my mother, you pillow-eyed freak!" Tuesday's speaking engagement went well. I had my speech timed at just under 7 minutes, which I thought was probably close enough to 5 minutes not to throw any schedules off. Before we left that morning I explained to Annika that I would be standing up in front of a lot of people and talking about her. I explained about the podium, the microphone, and that the main things I would be talking about would be her liver transplant and the time she was very sick. She was all, "O-kaaaaaay. Whatever." Then we got there, and she saw that it was actually a very large room filled with an awful lot of people, many of them wielding cameras large enough to double as rocket-launchers (it was a press conference, remember). That left her feeling a bit nervous, and it took the bribe of some insanely huge cookies from the cafe in the lobby to convince her to stay in the room. Thankfully, my good friend, Jane, had offered to come along and bring along her daughter, so the girls had someone to share in their bored misery. And I had an adult I knew there to make sure that Annika didn't decide to alleviate her boredom while I was speaking by stripping naked and parading around the perimeter of the room. This may sound like a silly exaggeration dreamed up for a quick laugh, but sadly, no. Annika would so love it if we moved to a nudist colony. As I was walking in to the press conference room, one of the Gift of Hope leaders pulled me aside to tell me that State Farm, which was holding the press conference, didn't want me to mention our fundraising efforts during my presentation. I was a little taken aback. I had been asked to speak, I thought, on behalf of Gift of Hope, as a parent of a child recently placed on the transplant waiting list. I was asked to talk especially about waiting, about Annika being on the list. April is National Donate Life month, and the event was sponsored, in part, to promote organ donation and publicize the new on-line donor database, which takes advantage of Illinois' new first-person consent law. Nowhere in the speech I had written did I mention our insurance troubles back in February. Nowhere did I mention that we had set up a (strictly regulated) fund run through a 501(c)3 charity because we were beginning to worry that Annika's medical needs might not be financially covered in the future. Nor did I mention the stress of receiving, frequently, bills for thousands of dollars that the insurance company denies, only to find out that it's all "just a coding error." (Did I mention that I was speaking at the corporate headquarters of a very large insurance company?*) All of those issues are totally relevant to our particular situation, but in no way relevant to the topic of promoting organ donation. So, yes, I felt a tiny bit insulted that someone, somewhere would think that I would take advantage of a captive audience and media presence to fundraise. While it's true that all fundraising efforts from COTA also have the stated goal of promoting awareness of organ donation, the reverse is certainly not true. Jane, always sensible, pointed out that, really, it is difficult to separate the two issues. In order for Annika to have a chance to grow up, she will need 1) a transplant, 2) insurance to pay for the transplant and the drugs she will need the rest of her life, and 3) money to pay for this stuff when the current insurance situation goes all to hell, as it inevitably will. Of those 3 things, I guess I see the first as being the one most out of my control. I will go sing on a street corner, learn magic tricks, jump through hoops in a dog costume and tutu, whatever I need to do to make sure that Annika's care gets paid for (and that's not to say that I'm entirely confident that I would be successful). But there's nothing I can do to increase the number of organs available for transplant, short of making people more comfortable donating by giving really great speeches about organ donation at press conferences - and knowing better than to muddy the waters by mentioning finances.
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So, back to my 5-minute speech that clocked in, at home, to just about 7 minutes. I was introduced by Jesse White, Illinois Secretary of State and organ donation promoter extraordinaire, who encouraged me to bring Annika up with me. Annika was wearing her favorite rainbow-striped tights and purple-flowered chucks (Is Webster's looking for a few good people? Because those urban dictionary folks, they take their defining seriously), so she wasn't averse to doing a bit of a star-turn up front. But then the speechifying started in, and Annika sat down, ready to hear the Story Of Herself. About 2 minutes in, Annika realized that I was leaving out ALL THE BEST PARTS!!!!!!! Therefore she felt compelled to bounce up to the podium every 30 seconds or so to remind me of some very important aspect of her being that really, REALLY needed to be mentioned before I could go any further. So there I was, caught between keeping to the timetable and ignoring Annika's helpful suggestions, or stopping my speech to hear her ideas and constructive criticism and incorporate them on the fly. Of course, I stopped to hear her. Sheesh. After all, the speech was about her, right? If she wanted me to mention her favorite things, well, OK. Luckily, I am familiar enough with her life story to pick up what she wanted me to mention with just a few words, so (I hope) the pauses were not too drawn out and dramatic. And I did manage to mention, in some fashion or another, everything that she wanted included, except for the fact that she is a "chip monster." (Which she is no longer, since her doctors have now put her on a low-sodium diet. More on that later.) After the press conference, one of the local news reporters followed us to a park near our house, so that they could get more footage of Annika. The cameraman came with us in our car, and it turns out that a Taurus does not actually fit 2 kids, 2 adults, and 1 big-ass camera comfortably. Never mind that I had to remove several dolls (in "car seats"), a picnic blanket, and Clorox wipes from the passenger seat, and then insist that he not point the camera at any part of the crumb-crusted upholstery. A few weeks back, Marla wrote about the stress of bringing cameras into your home, and all the little embarrassments you notice being captured on film. Marla, as always, was hilarious, but I can top that whole post in just one word: pimples. And do notice the plural here. I had three gigantic, red, inflamed pimples on my chin, with seven baby pimples clustered around like so many chicks. And that camera was really, really close to my face. Believe me, I do try to keep in mind that it wasn't about me and that my message was far more important than any unfortunate late-in-life acne (awash in hormones, remember?). But they were awfully big. When I saw the segment, though, I didn't even notice the pimples, as I was too shocked to hear that they had included footage of me in the car singing "Dubi Dam Dam" for the girls (at their ever so insistent request, although I didn't resist much at all since I figured that things like that were exactly what cutting room floors were for). Here's a reminder of the musical glory that is Dubi Dam Dam, just in case you're curious. I guess the point of including that bit was to illustrate that I was "just a regular mom" (that, I take it, was the whole concept behind sticking the cameraman in the car with us), except I have a 5-year-old needing a third transplant. We don't have tivo or a dvd player capable of recording, so there's no evidence of my regular mom-ness to share with you all. Sadly (said with a grimace). I was impressed with the report, though. Especially since I am a terrible interviewee. I am so used to doing most of my communicating on this topic in writing that I can't seem to come up with a pithy, well-phrased oral response to even the easiest questions. But, again, that's what cutting room floors are for, right? Then they moved on to interview ("interview"?) Anni. To my surprise she let them pin the microphone on her shirt--she freaked out when the reporter tried that for the organ donor awareness PSA that she was in last summer. But then she stuck her chin down to her chest and jutted her shoulder forward so that she could stare at that little black ball with a look of profound mistrust on her face. She did her best to answer the questions asked of her, but she was totally incomprehensible, what with her neck all scrunched up like that. It was like the news lady had attached a tarantula to her shirt, for all the wary trepidation Annika showed. So not much usable footage there. Of course, the best part, the very best part of the whole day was when Annika ran over to me tugging at her skirt just as I was finishing up my blathering way-too-long-for-tv-interview answers. "I have to go! Right! Now!" I knew there was no way that this was going to end well. Just, no way. So I decided that the least worst option would be at least to get Annika off into the cover of some trees. But, no, this was not happening, either, as I noticed that Annika had already tugged down her tights and underwear to full moon position. I got her halfway into the cover of a nearby pine tree and had her squat, harboring no illusions that the whole process was anything like discreet. On the plus side, when we returned to the park yesterday there was a new port-a-potty placed beside the parking lot. I guess there's nothing like public urination in front of a news camera to ensure good public works in the community! All joking aside, the port-a-potty is needed now more than ever, since Annika was, indeed put on a diuretic last Thursday. As long as she's on the pee-pee drug, we'll need to know the location of all potties within a two-minute radius at all times. Also she has been put on a low-sodium diet, which is absolutely the pits. No pretzels, no crackers, no goldfish, no moustache chips. So, yes ascites. Yes, failing liver. Yes, third transplant. Ugh. And there's really the source of my quiet right now. The whole idea of this third transplant--it's just not that easy to discuss, much less think about. I'm not looking forward to Annika getting sicker. I'm not looking forward to reliving that feeling of increasing desperation as the wait drags on. I'm not looking forward to sitting in that crappy waiting room at the hospital, worried out of my head that she won't be coming back out. But most of all right now, I just hate saying the words, "third transplant." I know that the list of people waiting for transplant is long, and getting longer every day. When I click over to Haley's website, where her mother, Cheryl, writes weekly updates about life after her loss, I read the sentence, "On October 1st 2005, Haley died without ever receiving her transplant." And I fear that the same will happen to Annika. But I also hate to imagine another child not even getting one transplant, one chance to live life, while we campaign for Annika's third. And then I ran across this forum thread. I didn't notice it back when it was current because I'm not usually on top of my StatCounter that lists referrals (and, also, I opt for the free version, which doesn't offer much in the way of referrer logs). I don't even suppose that it's worth responding to (and I didn't), or even thinking about, since it's clear that Annika is currently enjoying life and we're not selfish, tormenting parents. And I can't believe that letting her die of liver failure (a slow and unpleasant way to die), even with lots of morphine on board, would somehow be less cruel to her than putting her through another transplant (again, with lots of morphine on board), and I certainly prefer the long-term outcome possibilities of the second option over the first. But the one point that sticks, although not for the reason given in the discussion, is that this will be her third transplant. And it's not that it would be useless to try again. She's not a chronic rejecter (and even if she were, I know of some kids that rejected chronically with one liver and then did far better with the next transplant for whatever reason); she doesn't have some sort of liver-attacking infection that lays waste to all transplants. Liver transplants are tough, the most technically difficult transplant to perform from a surgical standpoint (so I've been told), and she's had complications. Repeatedly. Still, all things being equal, I wouldn't bet against Annika coming through this. But, of course, all things aren't equal. A liver going to one patient means another goes without. Donated organs are a scarce resource. I'm still pulling myself through Twice Dead, the book that questions our acceptance of brain death and organ donation, contrasting it with the huge public debate on this issue in Japan, which has meant that very few transplants have been performed there, despite that country's medical and technical expertise. It's not an easy read, and, although I appreciate that she is trying to give the topic an unbiased and objective appraisal, her views on the matter are quite clear: in the stories she chooses to present, in the questions she asks, and in the questions she doesn't ask. One phrase that clearly drives her to distraction is "organ shortage." But she never clearly explains why this phrase is so troublesome for her. Does she suspect that organ donor advocates are sneaking out at night stealing helmets from unsuspecting motorcyclists? Are we rooting for new and creative ways to inflict head traumas? Do we have a secret lobby pushing to block funding for new research in neurological medicine? What? Isn't it just a plain statement of fact: that there are not enough organs available to transplant everyone who could benefit from a transplant?** None of this is to say that anyone needs to jump in to reassure me that, yes, it's OK to hope for another transplant for your child, even if there are not enough organs to go around. I'm a parent and I love her blindly and that's as it should be. And I know, I know that we aren't "torturing" her out of a misguided and selfish love that refuses to let go. But it's much easier to write when the stuff in your head isn't so contradictory and unsettling. So here is this, instead: Yesterday I took Anni to the hospital lab for another blood draw. Our hospital is a catholic institution and there is a statue of Jesus holding out his arms in a beseeching manner right next to one of the exterior walls. Annika always likes to go have a look at him on her way in. Luckily, the statue is surrounded by fairly thick bushes so I don't have to worry about lecturing her about not climbing or anything else crazy she might decide to do which might send the nuns into fainting spells. As usual, she ran across the lawn up to the bushes to get a good look before heading in. As we walked in to the hospital, she threw a glance behind her. "I think I'll call him 'Johnny Jones'!" she declared. Sighing, I decided I had better set her straight before she started making up stories, loudly, about good old Johnny Jones standing out there in his bathrobe. "That's a statue of Jesus, Annika." I knew she had heard the biblical story of Easter at her lutheran preschool, so I thought I could probably let it go at that. But, no. She wanted to know, "What's Jesus saying back there?" And what do you do almost automatically when your child asks you a tough question? Ask a question back! "I don't know, sweetie. What do you think he's saying?" "I think he's saying, 'I'm alive!' ... " She threw her arms up in the air, like she was ready to hit the evangelical praise circuit, and then she added, "He's saying, 'I'm alive! So let's go to the park and play!'." She gave a little twirl, for emphasis, I suppose. So there you go, for any rational doubters who may suspect that Annika's life is a sorrowful one. She knows that living is about joy, and she knows how to find it, no matter what else is going on. And so do I. Easter Egg Hunt '06 easter eggs '06 easter '06 *I should also mention, though, that our insurance company has been quite helpful -- setting us up with a case worker who responds to these errors and corrects them quickly for us. Still, it takes time and effort and heaps on stress during an already stressful situation. I don't think, really, that the insurance companies are to blame here. Not really. They are, after all, businesses. I just think the whole system is set up in a crazy, unworkable fashion for those who actually need the coverage most. And I certainly think that health insurance should be set up and run completely differently than, say, car or home insurance. **I'm certainly being ungenerous here. I suspect that her discomfort comes from the fear that casting the situation in terms of a "shortage" might lead to a sort of activism that will pull the definition of "death" into murkier areas. But given the strong pro-life movement in this country, I cannot imagine that a move like this would ever be successful (not that I would support such a redefining of the boundary, either). Most proponents of organ donation act to address the shortage by combatting myths surrounding transplant and recasting public attitude toward organ donation.

Sunday, April 09, 2006

crispy

This Tuesday I'm going to do a 5-minute talk at a press conference here in town to promote National Donate Life month. Illinois' Secretary of State, Jesse White, will be there. He has been a tireless promoter of organ donation in these parts. I heard him speak a few years ago about his own family's experience: they said "no" to donating his brother's organs, and then his sister needed a kidney transplant several years later, which led him to rethink the system and his own attitudes toward organ donation. It was fascinating and moving to hear him speak on the subject. The real difficulty has been limiting myself to 5 minutes. I'm a bit of a droner, you know. But I've trimmed my adjectives and jettisoned some unnecessary medical details, and found the task of focussing my message to be an enjoyable challenge. Not that it should be that great a challenge. I mean it is five whole minutes; it's not like I'm trying to write haiku, here. (Organ Donation Haiku! I like it. Submit some in the comments section, if you're as bored by tonight's TV schedule as I am. Here a page with Haiku links. I like the first article from that page.)
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The other night, Jörg called me upstairs in his worried tone of voice. "Come here and look at this. Do you think Annika's tummy has gotten a lot bigger?" I looked. She popped it out for me, arching her back and rotating like a supermodel. "I don't know," I said, "No?" And then I added, "You worry an awful lot, sweetie." A few days later I took Annika in for her weekly lab draw, and her transplant coordinator called us a few hours later. "Everything's mostly the same," she reported, "except her albumin, which dropped by a lot. Have you noticed her tummy getting bigger?" Jörg was at work at the time, so he couldn't throw me a triumphant glance as he danced around the room, shaking his booty and chanting, "Uh-huh! Uh-huh! I knew it!" So we'll be taking Annika in to Chicago on Thursday to have her checked for ascites, which could be signaled by a drop in albumin accompanied by increased abdominal girth. If she does have ascites, she'll need to start taking diuretics. It's not a huge deal, really. She's been on them before, although I seem to recall that oral Lasix was nasty tasting. But it's kind of a bummer. Up to this point, Annika's been on post-transplant drugs. Lasix, to me anyway, is totally a pre-transplant drug. It's one of the drugs you take when your liver is failing. Mind you, this category is 100% a product of my own little mind, but, still, bummer.
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Annika has started physical therapy again. Our main "exercise" goal for her right now? Standing. Yup. Just ... standing. Evidently just being up on her feet for 5 minutes caused Annika's pulse to increase quite a bit and her breathing to become noticeably heavier. (Jörg pointed out to me that the heavy breathing could be due to ascites, but I'm not sure if this makes the situation better or worse.) On the way in to Easter Seals, Annika found a gigantic worm in the parking lot, still wiggling but looking distinctly uncomfortable. So we picked him up and moved him to the mulched area around the bushes. Annika got down on her knees and watched him expectantly. The worm was working his way down under the mulch, but he wasn't breaking any land-speed records in the process. Already 3 minutes late for the therapy appointment, I convinced her to go in the building, under the guise of giving the worm some "personal space." On the way in she announced, "That's the best worm, ever. I'm going to name him 'Christine.' " So that was his name. I guess she was having a Johnny Cash moment (I know the song was Shel's, but "having a Silverstein moment" doesn't sound nearly as funny). Later on that day, Annika decided to devote all her efforts to worm rescue missions. She carefully searched all concrete areas for any worms in distress. Just a few minutes later she came back holding one extremely crispy worm and looking forlorn. "I think he's already dead, isn't he?" Showing that I certainly do know when not to be sarcastic, I answered gently, "I'm afraid so. Why don't you go find a good place for him?" She trotted off, holding the worm in her hands, cupped in front of her. But then she tripped a bit over the uneven spot in our front walk. She paused. "Uh, mama? I think his head just broke off." And then I ruined my Good Mommy routine by asking, "Are you sure it wasn't his tail?" She lifted her hands right up to her face for a closer look. Then she just shrugged. "Could be." Needless to say, I wasn't invited to the funeral.

Thursday, April 06, 2006

stylin'

Organ donation can be an uncomfortable topic for all the obvious reasons - it doesn't normally come up, say, during speed-dating sessions - and shirts that promote organ donation aren't usually very cool At All. But here's a shirt from my friends over at Liver Families that finally brings on the style: Save 8 Lives collection on CafePress. Finally, a shirt that you can sport in good conscience without feeling vaguely like a public service announcement billboard. Thanks, Mika!

framing

The much anticipated Kite Day did not work out, despite the most beautiful sunshiny weather a little kite-flier could ask for. Annika was just feeling too tired, all day long, to work up enough enthusiasm to move herself off the sofa. I was disappointed: we had talked about it all weekend long, checked the weather report to choose the optimal day, discussed the kind of kite she would choose for the expedition. I know the outing was for her and Frankie, not me, but I couldn't help feeling a little angry that day. It's crazy to be angry at her, but sometimes I just want her to get up and get going and live life and be H.A.P.P.Y. Instead she sulked around the house all day, whining instead of conversing, and disagreeing with me at every turn. Frankie, too, was disappointed, but taking her to our backyard was enough to restore her good cheer, while Annika sat on the sofa, snuggled into a woven throw blanket and drinking chocolate soy milk while watching a DVD of Hello, Kitty! episodes from the 80s. Annika was finally lured outside by a visit from her neighbor friend, Sabrina. And then the two older girls (they may as well be pop star superheroes for the kind of adoring reaction they generate from my two) from across our backyard came over to turn it into a near party. But as the rest of the girls ran around happily, Annika ambled unsteadily at the fringes. Until, with no warning, she just toppled over. Frustrated and a bit sore, she headed back inside. Where her mood turned even darker, until we finally settled her into bed early. Contrary to most television specials on the subject, sick kids, particularly ones that have had issues all their lives, can be the most annoying creatures you have ever met. They have often been a bit over-indulged, and they frequently know how to pull the parent puppet strings with shocking mastery. They can get whiny and grumpy and generally exasperating. And you want to just shout, "Enough!" (And you sometimes do.) But in the back of your head, you know that usually the bad behavior springs from feeling lousy that day. The question becomes: how much slack do you cut a kid in the name of understanding? Obviously, you don't want to throw all your rules out the window, but you also don't want to make your kid feel like they don't have the right to complain or express their feelings. Sometimes, when I talk about it to other parents, it feels like the boundary should be simple. Something like, stick to the rules as usual, but be sure to make it clear that their feelings are warranted and that you are sorry they're not feeling well. As with everything else in parenting, though, it's always so much harder to put into practice. Annika greeted the next morning by telling me the first bold-faced lie of her life. Not the kinda sorta true, but not really, mumbled half-truths she's come up with before, but an all-out, embellished with lots of (false) details, 100% unmistakable Lie. So I took away all TV-watching privileges for the day. Now, one day may not seem like a lot to you normal parents out there, but TV is Annika's crack cocaine. And I was pretty sure that taking away the TV for one day was going to be about as much fun as going through detox with her, which, incidentally, I have done. Twice! (And they don't share the methadone with the parents, you know.) Surprisingly, though, the day was wonderful. We ran errands in the morning, and I let Annika and Frankie choose their own flowers (pansies, the big, fat, frilly ones with the eye in the center of the flowers) to plant around the house. In the afternoon, Annika went to preschool (she started this week and words cannot describe how thrilled she is to be back). When Frankie and I picked her up, she told me proudly that she had done "Kindergartner work" that day, and showed me the counting workbook page she had completed. Then we went home and planted flowers. True, she got tired after about 15 minutes and went inside to hang out with Jörg, but she was back out again 20 minutes later and played until bath time. She was asleep by 6:15. Patience, really, is what it takes. Sometimes a whole lot of patience. There are bad days, sometimes weeks and weeks of bad days one after another. But there are always very good days, too. And sometimes weeks and weeks of very good days. Framing skills are also very handy when you're creating the mental picture of your life. I've been focussing so much on the scary aspects of Annika's medical situation, mainly that she needs a transplant but isn't strong enough to undergo the surgery right now and meanwhile keeps bleeding. But the more pertinent fact is that Annika's surgeon is willing to retransplant her. Certainly he wouldn't choose to do that unless he thought that she had a shot at coming through the surgery and living many more years to come. So maybe those many more years will find Annika honing her whining skills to a sharp and annoying point. I'm sure at some point I'll finally muddle my way into a more effective approach for those moments when I find my teeth grinding together at the high-pitched keening sound of Annika protesting the unsatisfactory temperature of the water in her cup. This, in fact, was my very situation just a few days ago. I let out a theatrical sigh, loud enough to startle Annika into silence. Then I hunched my left shoulder up to the side of my neck, elbow cocked to bring left hand right up above my shoulder. Then I began making tiny sawing motions with my right hand, which was right up beside my left. "Do you know what this is, Annika?" Eyes wide and serious, she shook her head. "This," I say dramatically, "is the world's tiniest violin playing the world's saddest song." Jörg rolled his eyes at me, "I don't think she's quite old enough for sarcasm to be an effective communication tool, do you?" But Annika was not put off at all, looking, instead, rather intrigued. "How about we hear that very sad song, Mama?" And Frankie, bless her sweet and loving little heart, raised her arms for a hug, "Oh! Don't be sad, Mommy!"
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April is National Donate Life month to promote organ, tissue, and blood donation, and recognize the positive impact donors have had on the lives of so many. Go to Donate Life for more information, and, if you live in Illinois, you can click here to join the on-line donor registry. The organization I volunteer for (Gift of Hope) also has a wonderful and informative website. Pass the links along, if you like, and feel free to pass along this photo of a beautiful (if occasionally grumptastic) little girl from her forever grateful parents:

Tuesday, April 04, 2006

watch out for the bruise monkey

I spent last night making Annika and Frankie some car mix CD's, and today has been designated "kite day," so I'll save a longer update for tonight. But here are some quick Annika-isms while the girls are downstairs eating breakfast: Bad weather swept through the midwest over the weekend. Annika was very excited because we all went in the basement together when the Potato Sirens went off. Yes, that's right. We live in Potato Alley, and every Spring we brace for the onslaught of potatoes suddenly dropping from the sky, leaving unbelievable destruction behind. You know, they made a movie with Helen Hunt about it. (By the way, that movie was perhaps the worst thing that ever happened to our cat, Hepburn, who has the misfortune of bearing markings incredibly similar to the famous flying cow. For months afterward, Jörg would pick her up and twirl around. "We've got debris!") Annika fell out of her bunk bed last week. I guess it had to happen sometime, and the floor is nicely padded with carpet, but of course it still stopped my heart just a bit. She was fully awake (trying to exit down the ladder face forward), and caught herself with her arms and legs, so no head or abdominal injury. The next morning Jörg noticed that her legs were pretty bruised up and asked her what happened. She glanced down nonchalantly, shrugged her shoulders and replied in a matter-of-fact tone, "Bruise Monkey." And that was all she had to say on the matter. Of course that got a good laugh and Jörg asked her, "Are you a little comedian?" Annika, still in her perfect deadpan, corrected him, "No. You mean, 'Am I a chameleon?' " And then she finally broke down and laughed.