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.

Friday, April 29, 2005

ready, and a touch rebellious

It's done. 5 p.m. the day before we leave and the suitcases are downstairs. The yard is mown. The laundry is done. The house is (relatively) clean. The guest room is ready for Kate, who met the cats last night. Hepburn loves her. Hepburn loves anyone bringing food. Red suffered a panic attack upon her arrival, but I think a week should be sufficient to convince him that she's not planning to eat him. I don't have any vacation reading, yet, but I don't think there'll be time for much reading for a while. Joerg will be spending his mornings working at the university in Berlin (T.U.). You must remember that this is the summer before he turns in his tenure case, and so of course he could not go an entire month without working at all. Because of Joerg's association with the university, though, we were able to get into the apartments that the university owns there in Berlin. This is really the only way that we are able to manage an entire month. A hotel for that long would be outrageously expensive, and we just wouldn't feel right shoehorning ourselves into a spare bedroom of any of our friends/family there for 4 long weeks, keeping in mind that living quarters in European cities are not usually spacious affairs. (I love all those miniature kitchen things. They are so darn cute.) For one thing, my girls get up early. And they are noisy, happy, morning people. Of course, early here (5:30 a.m.) is going to be extremely late there (12:30 p.m.) so we'll see how it all works out. Annika has been so excited about the prospect of this trip - she's kept a calendar and marked off the days each night since January. The excitement was at fever pitch...until she realized that today would be her last day of preschool. At which point she decided that perhaps she would just stay home and invite over a few preschool friends to keep her company until the rest of us got home from our visit. Fat chance, little one. Not until you're 31 or so. I see the influence of her preschool everywhere. From the way she has started tacking "or sumpin like dat" on the end of every sentence to the "Cleanup Song" she starts singing compulsively every time she has to pick up even the tiniest crumb from the floor. The preschool is run through the Lutherans, so she's also been getting a bit of churchin' along the way, too. Just a bit, though. They don't push hard to convert the kids or try to scare them with stories of hell. Mainly it's just teaching them some Bible stories and praying before they have snack. And I confess that I find great amusement in hearing Annika's mangled retellings of her religious instruction. (Hey, she's only 4!) For instance, I'm guessing that she learned a song called "Praised be Jesus," but she came home singing "Tasty Jesus." And tonight in the bath tub she gave me conspiratorial look and motioned for me to come a bit nearer. I leaned in and she whispered, "Mom! You know what?" "No, what?" "Today? At preschool? I prayed wrong!" "You did? How did you pray?" "I prayed, 'Blessed Jesus, be our guest, LA LA LA LA LA! Or sumpin like dat." "Oh? You said, 'LA LA LA LA LA'?" (nods, grinning rather proudly) "And what did Mrs. Val say about that?" This seems to be the best part of the story for her, as she finally starts giggling as she says, "She didn't say anything because...she didn't hear me!"

And, finally, this from "Frankie loves Anni" world: This week the weather turned cold again. We had to turn on the heat once more, and the night temperatures were again below freezing. That didn't stop us from heading outside nearly every day. After all, it's Spring, no matter what the thermometer says. So we were all in the backyard in coats barely warm enough. I was pruning back the wild Forsythia bushes, hard, and Anni and Frankie were over behind the shed. I could hear the water from the hose going on and off as Annika filled her watering can and then ran out to water her flowers. (And we actually are a bit behind on the precipitation so far this month). I started to haul away the cut branches and so did not witness the following events. Luckily, our neighbor happened to witness the scene and told me the story. Annika filled her watering can and started to head for her flowers. She suddenly turned around and spotted Frankie following her every move with adoring eyes. Anni made a U-turn and poured the entire can of water over Frankie's head. Frankie looked a bit stunned, and so Anni gave her a big hug. Annika went to go fill the watering can again. Frankie follows her - trusting little puppy. And, yes, Anni dumped the next can over her head, too. Frankie, now shivering, looks at Anni like, "Please, sir, may I have some more?" This is when Joerg runs out and whisks Frankie into the warm house and into dry clothes. Frankie protests loudly at the interruption of Playtime With Annika. Annika goes inside to time-out. Neighbor expresses wish that she had had a videocamera handy.

Next post: Berlin, via Hamsterdam!

Wednesday, April 27, 2005

Bubble Pop!

Tuesday, April 26, 2005

suburban sixth-grade scandal

I recently caught wind of this minor controversy over at the local grade school. Evidently the competition among the 6th graders to join the pom-pom squad at the junior high next year was fierce. At our school only 2 of the girls who tried out made it. But there was some backroom grumbling among the parents of the disappointed girls because one of the girls who did make it has some sort of brittle bone syndrome and is in a full-body brace, which prevents her from being able to perform some of the basic maneuvers that the girls were asked to do. The snippets of conversation I heard included these comments: "I don't mind that she's on the squad. But she took a space away from a girl who could do the maneuvers." "We all have our limitations, and it's important that we accept them. My daughter can't sing and so she can't join the chorus." Needless to say, I think these parents were jaw-droppingly wrong. I mean, come on, do they really think that that girl doesn't face her limitations every single, goddamned day? There is no way in hell that she doesn't contemplate her limitations in and out and upside down. But it's just the freaking pom-pom squad. If the girl had the guts to go out there and give it a shot, surely facing ridicule from the less kindhearted members of her class in the process, then a few extra points are in order, I say. Because it is just the freaking pom pom squad, after all. Which, I know, is unfortunately pretty huge for the 12-year-old female of our species. And I don't think I'll even contemplate the pitifully incongruent comparison between breaking bones all the time and not being able to carry a tune. But I'm not about to get all self-righteous here. Because I know that I have said things that came off as jaw-droppingly insensitive myself, surely without meaning to. And also I was reminded uncomfortably of the hardest decision I have ever had to make as a low-level member of the University community. When I was teaching at the University of Indiana I had a student, R. He was a non-traditional student in that he was in his mid-30s, but he also had suffered a major head injury in a car crash several years before which had left him prone to severe seizures, as well as hampered his ability to learn and remember. On the first day of class he gave me the rundown of what to do in case he had a seizure in class, and I admit I was scared shitless. Within the first couple of weeks, he had had several seizures during lecture, but they were quieter affairs than I had expected, and we all relaxed. The semester proceeded as usual. Then one day he had a major seizure, falling from his desk, striking his head on the way down and kicking at the metal legs of all the desks nearby. There we had been, discussing the finer points of generative and transformative grammars, which had seemed awfully important to me until we all rushed over to clear the area around R to make sure he didn't injure himself anymore in the grip of the seizure. We chatted a bit about his plans, and what had made him decide to come back to school. He was impressive in his optimism and drive. He was a funny guy. Likeable and enthusiastic about being back in the world after his close call in the car crash. But he was a horrible student. Just horrible. I arranged to give him as much time as he needed to take the exams, and I stayed there with him to make sure he could ask for clarification if he needed, but still he consistently averaged a disheartening 15-20%, with many of his answers garbled and incomprehensible. Suspecting that perhaps the stress of a testing situation was making it difficult for him, I decided to offer more extra credit that semester than I ever have. At first I was offering the extra credit to everyone, but as the class grade average creeped up to a laughable 98%, I secretly began offering assignments just to R, for whom it all had been intended in the first place. But R was also enrolled in 3 other classes, all of which were proving just as challenging to him. And he barely had time to finish the regular coursework, much less an extra-credit assignment. So when it came time to turn in final grades, he had only managed somewhere above the 30% mark. Still, I just hated to fill in that "F." How many points could I give for bravery? In the end, I just couldn't do it. He was so far away from passing, and I knew that the 30% he had was already the result of incredibly lenient grading. So I gave him an "F," and sent him what I hoped was an encouraging email. I felt horrible about it for weeks. Still do. So surely my soapbox on the pom-pom situation is a flimsy one. Why is it that I felt that I couldn't just fudge a little and give R a "D"? After all, it was only an Introduction to Linguistics class, not Med School. It's not like anyone's life was going to depend upon whether R could successfully diagram a sentence or analyze the pragmatic content of an utterance. Still I can't help but feel that making that little girl's life as close to normal as possible and rewarding her gutsiness was the right thing to do, even if another little girl came home crying because of it.

the character trait that Joerg thought of when he promised the "for worse" part

There is way too much to be done around here before we leave. But being on top of things has never really worked out for me. Yesterday Annika cut her hand somehow. She was playing with Frankie and the next thing I know, she runs to me bleeding like crazy. The last I checked, Frankie didn't have any sharp edges and this was clearly not a bite wound (no, Frankie doesn't actually bite), and Annika seemed unsure how she had done it herself. We just had to let the mystery be, though, as Annika was squirting blood everywhere. Mainly all over her shirt. Anni's current liver/spleen problems mean that her blood doesn't clot as quickly as it should, but this was the first real squirter I had ever seen. So we held pressure for a while, and then cleaned it up and applied the magic band-aid (ultimate cure-all for many of childhood's mishaps). I decided to be responsible and get Anni's shirt cleaned up right away, rather than leaving it for the next laundry day, by which time the stain would be indelible. A few minutes later, I draped the shockingly clean shirt over the kitchen sink to dry a bit before moving it to the laundry room. I was feeling quite virtuous. An hour later we were headed out the door, and I went to the sink to replace the water in Anni's cup. Except that it wasn't water in the cup: it was chocolate soy milk, which splashed all over the freshly de-stained shirt. Chocolate soy milk is nearly as hard to get out as blood. I don't know if it's the chocolate or the soy, but my girls have lots of brown polka-dotted clothes. Unwilling to accept the undoing of my virtuous laundry deed, I set about removing the chocolate soy milk. Water alone wasn't cutting it, so I reached for the nearest soap-like stuff, which happened to be some neon green Palmolive dish soap (neon green? why, oh why?). The chocolate soy milk came right out, only to be replaced by a neon green stain from the Palmolive. So you see why I am still content to think about what I should pack for a few days more rather than actually trying to stay on top of it all.

Sunday, April 24, 2005

the suitcases are out

It has been a madhouse around here. I was contacted a couple of weeks back about having Annika appear in a public service announcement to promote organ donation. Obviously I agreed, but then I was struck by the idea of including lots of kids who had had transplants or were currently waiting for transplants. So many of those announcements do a great job of presenting one face and one story to really connect with the viewer/listener, but I think there is an impression that it's relatively rare for little ones to need transplants, which is completely untrue. There are currently 116 children under the age of 1 waiting for transplants, and over 2,000 children under the age of 18 waiting (data from the Organ Procurement and Transplantation Network on 4/24/05). The producer of the spot really liked the idea, so much so that she agreed to hold off shooting long enough for me to contact other parents and arrange a time for us all to meet. So far we have 9 kids ranging in age from 18 months to 15 years coming, plus one adult who received a liver transplant 20 years ago at the age of 4. I'm planning a wading pool/sprinkler party in our backyard with the kids, so I think it will be great fun. And hopefully our last year's wildflower garden will be telegenic enough by mid-June. I'm not sure what the plan is for the shoot, but I can certainly imagine simply showing all the kids having loads of fun and then doing a close-up on each one with a title that gives name, age, "loves glitter glue and her baby sister," and "transplanted 3 years ago" or whatever their numbers/loves are. I'm sure the older kids are capable of expressing some fairly moving thoughts on organ donation, and I bet we could get them all to shout "Thank you, organ donors!" together at the end or something like that. Yes, I have an overactive imagination. And speaking of overactive imagination...Last night my neighbor had a moms party over at her house while her husband and kids were out of town. There were margaritas, wine coolers, cheap beer in cans, and you might have even thought this was a college students' party until you took one look at the spread on the dining room table, and knew for sure that no college students in the world could ever have produced those cheese balls, marbled cheesecakes, mini-quiches, and various phyllo dough extravaganzas, all neatly arranged with the sweets at one end of the table and the savories on the other. I myself enjoyed a rare few glasses of wine, which went straight to my head, as the old saying goes. Actually I had been carefully sipping along until the older, more experienced moms decided to compare head lice stories, which was when I started tossing that Merlot back. You would think that after witnessing several liver biopsies, an upper endoscopy, an untold number of IV placements, emptying the contents of bags that drained infected bile for several months, numerous trips to the PICU, etc. that I would be made of stronger stuff, but, no, the idea of bugs laying eggs all over Anni's curls gave me the heebie-jeebies. Stumbling across the my dark lawn after midnight, I considered, then rejected, going into Anni's room to examine her head while she slept.

We have also been busy readying ourselves for our big trip to Germany next week. Joerg's mom has never met Frankie, and hasn't seen Annika since after her second transplant at 15 months. Joerg's father has come here twice for brief visits, but his stepmom has never met either of the girls. And none but one of his close friends have ever met either girl. Annika and Joerg are just plain excited, Frankie is oblivious, and I am giddily nervous. Taking Annika so far from her doctors...well, it's something like a toddler taking her first few tentative steps away from the safety of her parent's arms, jubilant and terrified all at once. Again, I exaggerate - there are great doctors and hospitals in Germany, I know. But still. And then there are the practical issues of preparing to pack for a month in a foreign country with two young children. And preparing our house to be occupied by a college student (with a reputation for responsibility, cross fingers) for a month to attend to the cats and plants.

Frankie is all set to charm the German side of our family with her new social skills. She watches us all carefully trying to figure out how to behave, and even extends her newfound courtesy to the Grande Dame Cat, Hepburn. If Frankie wants to interact with her, she drops down to her hands and knees and starts meowing. When Hepburn comes over, as she always does, Frankie butts the top of her head up against Hepburn, exactly as she has seen the cat greet us. When Hepburn responds in kind, Frankie meows again and then pets her with a gentleness that is shocking in one who was more Godzilla than toddler just a few months back. Hepburn obviously has a soft spot in her heart for little Frankie, as do we all. She already has "Please" and "Thank You" down perfectly, and even happily takes turns with Annika with any coveted toy as long as I beep to announce their respective turns. Her only annoying new habit, and it is really much more annoying than it is going to sound, is that she squeals "Ow!" in a dragged-out two-syllable whine everytime any little thing is being done that she does not enjoy. And she has become just a little too fond of the word, "No." Her verbal skills are really quite impressive - she's been stringing together two words for a while now, but it seems that we're getting new constructions every day ("There you go", "I do", "More cheese", "Wait Mommy Anni", "No night-night"). The girls and I went to a park last week, and there was a first-time mom there with her 18-month-old. Frankie ran right over to her, "Hi baby!" despite this child being, if anything, a tad larger than she is. Then Frankie started jabbering on about the dog she saw playing in a nearby field. The other baby was more the silent type, and I could see the mom forming little worried thoughts comparing the verbal skills of the two. I pointed to Annika, who was narrating another of her intricate stories to herself nearby as she lined up members of her pea-gravel family up on the retaining log. I motioned to her and said, "And that one didn't speak more than 3 words until she was nearly 3, but look at her now! Kids are amazing." The mom smiled back. I hope to have at least one more post before we leave. And I should have some sort of internet access once we get settled in. I can't wait to see how the girls react to this adventure.

Monday, April 18, 2005

it's not about the streamers

Am I one big whiner? I was shocked that so many comments left on my last post were offering consolation for our rough trip to Chicago, when I swear that in my mind the whole thing had gone off swimmingly. Has complaint become a habit for me? How unpleasant. Take, for instance, the issue of a digital camcorder. I've been hinting around for one for several months now, having enjoyed taking little mini-movies with my digital camera, but always so disappointed with the dismal lighting in most indoor situations. Joerg does not want us to become the parents that view every event through a tiny LCD screen, rather than watching, and participating in, the event itself. Having convinced him that I'm more of one for videoing short segments to capture the mood of a particular age and phase rather than actually trying to record Life, there was still the issue of the money. Like most people, we can't just decide to buy something and then go buy it. If we decide to buy something, we then need to decide what will therefore not get bought, like, for instance, a printer that actually prints without blurry blue lines appearing haphazardly throughout the page. Having convinced him that the items given up on my wish list will not magically reappear 2 weeks after the camcorder purchase, we then needed to settle on a budget. We went through a similar process 16 months ago, when we decided to finally buy a digital camera for my Christmas/Birthday present. I have been very happy with the camera we bought. Not my dream camera, by far, but the dream camera was clearly leagues out of our budget. But who can complain when it gives me shots like this: fabfrankie01 and this: 07fishmouth and this: paint9 and this: DSC00373 and this: DSC00485 and this: DSC00519 and this: DSC00632 Evidently, I can. Joerg pointed out that he was hesitant for us to settle simply on a camcorder that we could afford because I complain all the time about how slow the digital camera is, or how it blurred this shot, or missed that shot. Imagine my surprise. Of course, I denied it. I didn't actually deny that I complain about the camera, but I reasoned that I give equal air-time to positive comments, too. Like how handy it is, and how much money we've saved on film and film developing costs. And how I've gotten pictures that I never would have gotten if I'd had to pull out the big, bad, wonderful film camera. But then I got to thinking, and it wasn't pretty. For a few days last week, I thought I was going to have to get a new bike. Well, not have to, but my bike wasn't working and I couldn't see spending money on fixing up my cheap Huffy rather than simply garage selling it to some teen girl with a mechanically-minded dad; a girl who would park it in front of her best friend's house when she visited, right there in front so everyone could see it, and love that bike all summer long. So I started telling Joerg how it would be so great to finally get a better bike, a bike that I could take to the local bike shop without blushing. And then my own mechanically-minded dad visited and had the bike fixed in approximately 5 minutes. Approximately 30 seconds after he pronounced the bike "fixed," Annika was clamoring to take a ride in the bike trailer. Ah, the bike trailer. Yes, I had had my heart set on a Burley bike trailer, but ended up with a used InStep that I got for $15 at a garage sale. But the girls buckled in gleefully, shrieked when I rolled down the driveway, and yelled, "Hi, doggie" at every passing canine, or any vaguely canine-like animal, for that matter. It was joy in motion. "What in the world is wrong with me?" I thought. I am going to turn my girls into mad little competitive consumers if I keep this up. But then our neighbor Sabrina showed up, and asked if she could ride with us for a while. She was sitting proudly on the brand new shiny bike she had just gotten for her seventh birthday, and couldn't wait to show us how much faster she could go now that her wheel size had increased from 14 inches to 18. When we got back home, Sabrina asked Annika if she would like her old bike. Anni, too stunned for words, just nodded her head. But when Sabrina ran off to get it, Anni turned to me and began to wiggle a little as she breathlessly repeated for me, who had stood there through the entire conversation, that Sabrina was going to give her her old bike. If you remember, this bad-ass bike was the one Anni had fallen in love with at the store. But when Sabrina brought over her old beat-up bike, with stubs where the streamers should be and strange orange marks on the seat, Anni saw stars. Of course, the bike worked perfectly and Anni could not wait to hit the pavement on her new wheels, not really new but blessed by the incomparable coolness of Sabrina, The Older Girl Next Door. Clearly, I have not screwed my kids up just yet. I am a lucky lucky woman. From our perch of a comfortable life here in the flatlands it should be easier to remember the old truism that it's not what you have, but what you do with it that counts.

Friday, April 15, 2005

back on the train

Annika had her regular full-body CT today to monitor the status of her lymph nodes after our brush with PTLD last year. She has these CTs every 3 months, and the last scan showed some enlargement and spreading, so we were a little nervous. The good news (very) is that none of the lymph node masses are spreading or enlarging. The bad news is that it appears that some sort of sinus infection has taken up permanent residence inside her little head. So the docs are looking for some mega-antibiotics to give her for the next 6-8 weeks. We had to leave this morning at 5 a.m. for her 8:30 appointment. Of course she was still sleeping when I went in to pluck her out of bed. She snuggled into my neck, and then, as she gradually woke up and realized what was going on, she gave me this little progression: in a sweet, sleepy voice: "Is it morning already?" becoming faintly accusatory: "What are you doing to me?" progressing to slightly hysterical: "Where are you taking me?" full-blown panic attack: "Noooooooooooooo! I don't want to go to Chicago. You take me back upstairs to my warm bed right now! Nooo! Noooo! Nooooo!" I began to flashback to our last horrible trip to Chicago, and regret my decision to take this trip alone with Annika. I pictured the next 3 hours, driving alone, idling along in Chicago rush-hour traffic while the wounded wails of my panicked child emanated from her car seat. After wrangling Anni into her carseat, she began to cry that she was too cold. So I headed inside to gather the rest of our stuff, and grab a blanket for her. By the time I got back to the car with the blanket, she was completely calm and informed me, "OK, I'm not sad about going to Chicago anymore." Whoa. Talk about your mood swings. But as long as they're swinging in my direction, I'll take it. We had just left our neighborhood when Anni remembered that we had forgotten her doll, Berf. I had promised that Berf would help her drink the contrast solution before the CT, so of course I had to head home. Never mind that we were already leaving a good half-hour late, due to her unexpected freak-out session. Back on the road and nearly to the interstate, I realized I had left her meds for the day sitting on the counter, so back again we go. Annika was simply delighted with the apparent ease with which I headed back home again, and so for the rest of the trip she kept "remembering" things we had forgotten and suggesting we turn back around. Of course, Anni couldn't eat breakfast, nor could she drink anything past 6:30 a.m., but she was remarkably cheerful. Mostly she requested the songs she wanted to hear, and sang along with them at the top of her lungs. We watched the sun come up together, and as we drove along with her blissfully singing the bittersweet lyrics of The Pretenders Back on the Chain Gang ("I found a picture of you, oh oh oh oh...Those were the happiest days of my life" - needless to say, the "oh"s are her favorite part), I got a little teary-eyed as I remembered some of my favorite times with her. It doesn't seem like she should be a girl old enough to sing along with The Pretenders yet. Everything went incredibly smoothly at the hospital. Also incredibly fast, which is very helpful when you're 4, hungry, thirsty, and can't wait to get back home to see Grandma and Grandpa, who came up to stay with Frankie for the day. Bringing Berf along proved to be invaluable, as she was a great help in getting the yucky oral contrast in her. I am so glad that the straw fit in that doll's mouth. When the nurse came in and told her it was time to get her I.V. placed, Anni responded, "OK! Let's get this party started!" She was again very good, albeit a tad bossy as she repeatedly informed the nurses, "You guys, be sure you don't hurt my vein." One of the nurses kept trying to make her look away, even to the point of trying to turn her head by force. But Anni really feels much better if she can see what's going on. Unbelievably, I managed to let the nurse know that without descending into sleep-deprived bitchiness. I must be growing up, too. So this all seemed to be going too well. Naive me, I didn't know to let this worry me. But then comes the pre-sedation: our old friend, Versed, or "the happy juice," as it is known around those parts. Annika has had Versed hundreds of times, and always with giggly, cute results. Perhaps having started already giggly and cute, we were just doomed. For whatever reason, the Versed turned her into a screaming ball of raging paranoia. At the sight of the CT machine, she went into a red-faced, vein-bursting, wiggling fit of terror. They had to go ahead and put her to sleep before positioning her on the table, and they had to give her a bigger dose than usual. Even with the bigger dose, it didn't take her long to start moaning and wiggling again, so they had to call the anesthesiologist back for permission to hit her again. So she was incredibly doped-up and pukey when she awoke. With the CT behind her, though, she was ready to hit the road. Once she was able to say, "Mama" without flopping her head, rolling her eyes, and smacking her lips shut on the "m" sound like she was about to burst into symphonic humming, she was released. After picking up a Happy Meal from the hospital McDonald's and selecting an incredibly tacky hot-pink poodle from the gift shop, we were headed home. The hot-pink poodle (named "Muhsheeshee") conversed for nearly an hour with the Happy Meal Bulldog. She evidently spent the rest of the trip decorating her feet, legs, and face with a black magic-marker ("Look, Mom. I'm a coloring book!").

Wednesday, April 13, 2005

network tv is bad for my health

Here I am steaming and stewing again. I just watched the premiere of Revelations on NBC. And wouldn't you know it? Organ donation came up again! Hooray for National Donate Life month! But, wait...What's this? You mean, the transplant people are the bad guys? You mean, they're fighting the Catholic Church? And, somehow, organ donation is being presented as antithetical to the Right to Life movement? And that's when my head exploded.* This one was even worse, much worse actually, than the Grey's Anatomy episode. For one thing, in a nod to the new vocabulary we have all acquired post-Terri Schiavo, the child was described as being in a persistent vegetative state. People in persistent vegetative states are nowhere near being qualified as organ donors. This child, miraculous or not, was speaking and writing. That’s a pretty good indicator that she’s not brain dead. But yet, there was some team of ominous (and arrogant and stubborn, of course) doctors pushing for her to be an organ donor, while a nun and a priest fought to stop them. I don’t doubt that the Catholic Church would be against using that child as an organ donor. So would all Organ Procurement Organizations and any doctor associated with any transplant program in this country. What’s going on? Does it really need to be said that the Catholic Church supports organ donation as a compassionate and loving choice? As do all major religions in this country? Did they need to conflate the issue of Right to Life with organ donation? Did they need to create characters pushing for organ donation to be the bad guys? What’s going on here? *edited to add: I missed the first 15 minutes of this show, which was probably a good thing, as Cecily pointed out that the parents were evidently being paid by the recipients of their child's kidneys. OK. There's nothing to say to that except maybe...Holy Crap. Oh. So. Illegal.

Tuesday, April 12, 2005

watching the ripples

I have sent off my letter to several places: ABC and a few papers. I've read others' responses to the episode, and it seems that those who were already predisposed to think positively about organ donation didn't find the episode particularly negative. Those who think about donation constantly, like the other transplant parents I know, were shocked at how wrong they got the whole setup. And I do fear that for the many people who are even somewhat uncomfortable with the idea of donation, that this episode left open the door for many of the misconceptions surrounding the process. And then I read this post, and I just cried. Here is a woman who went through so much with her child, and they made the decision to donate his organs. And then here comes this show leaving her feeling awful about her decision. And no wonder. The donor's family was raked over the emotional coals and the doctors were often brusquely dismissive of the donor (not all of them, mind you). I have no idea how any donor family could have watched this episode and felt anything but sadness. This is the terrible dilemma of being the mother of a transplant recipient. You are so grateful to this stranger and so terribly sorry at the same time. I want to reach out to show them what an enormous, meaningful gift they gave and to somehow, someway ease some of that pain. And yet I know that the heartbreaking beauty of the gift was in giving what they had lost. It's hard to know how to say "thank you" for a gift of that magnitude.

Monday, April 11, 2005

letter to the editor

I was working on a post about why I let my girls wallow in Disney Princess paraphernalia, but have instead been sidetracked by the abysmal presentation of organ donation on Grey's Anatomy last night. I felt so strongly about it that I decided to compose a letter to send to ABC and any letter to the editor section that I think might possibly print it. Here's what I've written: I am a medical show junkie. So of course I watched the April 10th episode of Grey's Anatomy on ABC, which dealt with the issue of organ donation and transplantation. I admit I am not unbiased on this issue (my 4-year-old daughter is a liver transplant recipient), and I also realize that the job of a television show is to entertain, not inform. I even suspect that the writers of the show felt that they were presenting a fair look at the joys and sadness of the transplant process. And, yes, I do know that there is sadness. We never forget that there was unfathomable grief in that hospital in Chicago, when our donor family said, "Yes, he would want to help others." We never forget that a life was ended too soon, and it makes that one last gift from our daughter's donor all the more precious. So we know there are two sides to the transplant story. Still, the show was so filled with inaccuracies in its portrayal of the donation process, many of which serve to fuel the myths that prevent some people from agreeing to be donors, that I switched off my TV saddened at the thought of all the millions of viewers who went to bed disturbed by the idea of organ donation as it was presented in that episode. I doubt any leapt from their armchairs to go sign the back of their drivers' licenses. I suspect many may have told their families, "I don't want that." My letter will never reach as many people as that one hour of major network TV did, but I still feel the urge to try to undo some of the damage and set the record straight. Here are the issues that this episode misrepresented: 1) "Brain death" is death. It is not a condition that a patient might, at some point, recover from. It is not the same thing as being in a coma. A patient is declared brain dead only when tests have been conducted that establish that the injury to the brain is incompatible with life, and that cardiac arrest is inevitable. If the person is to be an organ donor, these tests are corroborated for their accuracy. In this episode, the patient was declared brain dead after only the briefest of examinations by the doctor, which in itself is misleading, but even further was being given 6 hours before being "declared." This leads to the confusing situation of patient being referred to as "brain dead," while simultaneously implying that there is some chance his condition might have reversed itself. The confusion created by this misuse of terms leads to one of the most vivid fears that people have about being organ donors - the fear that their organs might be removed while they still have a chance at recovery. The fact of the matter is that doctors do not refer a patient as an organ donor unless the brain has been so horrendously injured that there is absolutely, beyond a shadow of a doubt, no chance that they will be able to recover. The first job of doctors really is to protect life, not to procure organs, which leads to the second inaccuracy in this episode... 2) The doctors who treat the organ donor patient are always completely separate from the doctors who are responsible for procuring the organs. In this episode, the interns treating the patient appeared to be eager to turn their brain dead patient into an organ donor in order to have a chance to get in on a "harvest surgery." Leaving aside the matter that "harvest" has long been recognized in the transplant community as an insensitive way to refer to the process, there is the fact that this situation would never, ever arise. The insistence on completely separate medical teams for the patient who may be an organ donor and the teams representing the transplant recipient helps to avoid any conflicts of interest that might compromise the care of a potential organ donor. Hospitals performing transplants are subject to strict review, and any hospital that did not provide separate medical teams would soon find itself out of the transplant business. No person need fear that they would be rushed into being an organ donor simply because some overeager interns couldn't wait to get into the OR to remove his/her organs. 3) The staff who talk to the family about organ donation are highly trained and compassionate people. This episode sent in an inexperienced intern who confesses she's "not a people person" to go over the donation process with the wife and young daughter. As a result, the donation process was presented as a sort of emotional torture to the family. Truly, talking about organ donation in the first hours after you have learned that you have lost a loved one must be incredibly difficult, but the intern's behavior was unbelievably callous and showed no respect for the emotional support that is offered to families making this compassionate choice despite their grief. The wife, in tears, expresses horror over the idea of donating her husband's corneas and skin. "How is my daughter supposed to look at her father at the funeral?" is her heartbroken question. This question is left in the air, as the intern is unable to deal with the woman's grief any longer. Thus is left unanswered another of the reasons people sometimes hesitate over organ donation: the wish to have an open-casket funeral. Great care is taken to ensure that an open-casket funeral will be possible for the family. An organ donor looks no different in the casket than a non-organ-donor. The organ donor is also treated with much more respect than this episode would lead you to believe. In this episode, after all the organs have been removed, the doctors simply clear out, leaving the poor donor open on the table. It is left to a kindhearted intern to come in and close him up, apparently her own novel idea. In the real world, donors are always very carefully closed and returned to the family in order to have a proper funeral, and are treated with both dignity and respect. Also in the real world, all the wife's questions about donation would have been answered clearly and sensitively by a person specifically trained to deal with grieving families contemplating organ donation. Although it is a heartbreaking time for families, no hospital is going to make it harder on a family by sending in someone so blatantly unsuited to the task to talk to the family, and no hospital would treat a donor with such disregard. 4) In this episode, the recipient of the donor's liver was right in the same hospital, and it appeared that he received the liver mainly through good word-of-mouth (one intern hears of the potential donor through his friends and says, "Hey! I know who could use that liver!") This makes it appear that receiving an organ is done mainly through having the right connections, and, indeed, the recipient just happens to be good buddies with the chief of surgery in the hospital. In fact, the allocation of organs is done through an external agency (UNOS or United Network for Organ Sharing). There are strict rules to be followed in determining where donated organs are to go, including such factors as severity of illness, location, and time on waiting list. It is not an arrangement made between doctors in-house, and one does not go to the top of the list, even if his or her best friend happens to be the Surgeon General. Sprinkled throughout the episode were doctors making callous and misguided remarks, which I won't bother quoting here. There were also a few remarks that seemed to be attempts to balance the view (when one intern calls the waiting recipient teams "vultures," the other intern notes that each one of them represent a life that is going to be saved), but overall the factual inaccuracies were so many and so important that the episode could only be viewed as an impediment to the goal of April as "National Donate Life month." I have lost family members. I have known families that have suffered great loss, even families who have lost children to the same liver disease my daughter had. One of the most moving tributes that can be made to those loved ones is to plant some living thing in their memory - a tree, a rosebush, or even an entire garden. I think we are drawn to the beauty of watching life go on after death, of knowing that here is a living thing to remind all who pass by of the love we shared. When I send out my letters to our donor parents, along with photos showing how she is growing thanks to their child's gift, I think to myself that what I am sending them is proof of a memorial more fantastic than any million-dollar garden. My child is a living, breathing, laughing, running, hugging, joking, singing, loving reminder everyday of the love one human can show another human, even after death. I realize that many of the inaccuracies portrayed in this episode were perhaps simply the result of needing to dramatize the situation and fit it into an hour-long segment, but I do believe that these donation and transplant stories are dramatic and moving as they are, without the need to distort the process. I can only hope that ABC did not inadvertently lead potential donors to view organ donation negatively. It would be a disservice not only to the nearly 89,000 people in this country waiting for transplants, but also to potential donors and their families, who might miss the possibility of making life out of tragedy.

Friday, April 08, 2005

welcome, Spring

These are branches from the forsythia bushes I planted with my dad the summer before Frankie was born. I was 7 months pregnant, so my dad dug the holes and I stuffed them into the ground. Usually when I plant a tree or bush, I go all crazy about making sure I've dug the hole twice as wide as the root ball and, for bushes anyway, I work some compost into the subsoil and do all that anal gardener stuff. My dad's garden philosophy,on the other hand, might be summarized as, "Poke it in the ground. If it lives, it should be there. If it dies, then it wasn't meant to be. Plant something else." It was really bugging me just to plunk these bushes in those tiny holes with only our stiff clay surrounding their new little roots. But I was rather large and sweaty and experiencing the second wave of nausea that accompanies my pregnancies, so I was really in no position to argue. Plus, these tiny little bushes had been given to us by a friend, whose own huge forsythia bushes could not stop having babies all over his yard. They needed a new home, and quickly. Again because I was pregnant, we had hired some neighborhood boys to mow the lawn for the summer (Joerg is exquisitely allergic to grass). I marked the bushes, but they were so tiny that they went under the mower several times. I didn't think those bushes had a chance, which was too bad, because we were all tired of looking at the chain-link fence. Of course the forsythia bushes have gone crazy after just one full summer of growth. I'm even going to have to do some serious pruning once the bloom is off. Amazing how hard it can be to kill plants outside. The bush I planted with such tender loving care the first summer we moved here, a very hardy viburnum, looked for all the world like a dead dead dead collection of sticks for its first two summers. I have no idea what I did to the poor thing. I cut it back completely to the ground at one point, tired of having its brown, curled leaves depressing me everytime I pulled into the driveway, but now it's back and growing well. Last summer I tried seed growing for the first time, but not with the whole seed trays and lights on chains business. No, just the "throw the seed on the ground, water, and see what happens" approach. I got a ton of weeds growing, which I didn't know to pull until they were huge and covered with stickers and thorns, but we also got some lovely surprises all summer long. Annika loved it. And I definitely see why so many writers pull huge life lessons from their gardens; why so many of the reflective minds that I enjoy so much have been avid gardeners. Those lessons just stare you in the face every spring as you begin contemplating what to do this season with your environmental work-in-progress. For me, anyway, I need to spend less time obsessing over stupid details and just try to find the stuff that works where I'm trying to put it. It never should be as hard as I try to make it. I'm not very good at developing and articulating a personal philosophy. But there were those crazy forsythia bushes giving the lie to all my perfectionist attempts at soil control, and it's not so hard to make a leap from that to life in general, so I decided to give it a try. I blame it on all the sunshine today.

Learning

Annika is nearing 72 hours of non-stop fevers, but they have definitely decreased in intensity. No one else has gotten sick around here, so it appears to be her special bug. Her concern about not sharing germs with Frankie wore off after the first day or so, but so far Frankie hasn't come down with anything. I wonder if Annika is going to stop believing the germ theory of illness, since she can't have missed the fact that Frankie remains healthy after lots of hugs and kisses. I guess we're going to have to figure out some way to explain that germs are her particular enemy, more so than for other kids. Hmmm. Not sure how to go about that just yet. Frankie has been making all sorts of mental leaps and bounds. Having shown nothing but disdain for books all these months, one has finally snagged her attention, and she begs for me to read it over and over and over again. Whew! I'm so relieved--gotta have some book-loving goin' on around here. So far, I'm enjoying Frankie's first favorite book more than I enjoyed Annika's first favorite book. One of Frankie's favorite pastimes right now is grabbing my glasses off my face (roughly, I might add, with little regard for the nose or ears being used to hold them in place). I find this a particularly annoying habit, and figure that we have lots of other fun games to develop that don't jeopardize a $280 crutch that allows me to see my own hands held up in front of my face. Thus, I have been trying my best to redirect her playful impulses. She wasn't going for that, so I've been forced to get more creative. Obviously, she is still too young for time-outs to really work, but she does understand, "No!" The downside is that hearing "No!" tends to send her into paroxysms of grief, which are perhaps even more annoying than the grabbing of the glasses, and certainly more heart wrenching. So I decided today that I might try a little aversion therapy. Nothing too terrible or mean, of course. I just decided that I would rub the palm of my hand gently over her eyes every time she grabbed my glasses until she gave them back. I can't see; she can't see. Reasonable. I soon discovered that this does indeed drive her crazy - not only can't she see, but also I think it tickles her eyelashes. Suddenly she would focus all her efforts on getting me to stop, which I did as soon as I had my glasses back on my face. Thus, she felt like she had actually won the game and the temper tantrum was avoided. Genius! Sure enough, after several sessions it was clear that Frankie was learning from my therapy. Learning not to grab my glasses? Oh, no. Learning that she needed to grab my glasses and then run like hell with them. And speaking of learning environments (and aversion therapy?), I was in a high school today for the first time in ages. I was volunteering at a wellness fair at the high school down the street, manning a booth to inform the kids about organ donation. Someone on the wellness fair committee must have a warped sense of humor because our booth was right next to the "Motorcycle Safety" booth. They had some sort of super-charged bike right there in front of the booth, but no helmet in sight, although the little video playing on their T.V. was entitled something like, "Helmets! They're Cool! Really! Yes, They Are!" All the kids gathered around the bike. Not many bothered watching the video. Then they moved on to our booth, where I asked if they had thought about being organ donors at all. For those that were interested, and many were not - teenagers, you know, are immortal - I pointed to a picture of Annika I had brought with me and told them to look for her someday playing in the park down the street from the school, all thanks to an organ donor. I was wearing my organ donation t-shirt which features an abstract starry sky with the words, italicized for dramatic effect, "Don't take your organs to heaven. Heaven knows we need them here." Catchy, clever like a country song, and I think extremely effective in this very religious town. Although I'm not exactly convinced on the concept of Heaven myself, I certainly do like the idea. Anyway, I don't think we need our organs in the ground, either, but that just doesn't have the same ring. (Obviously, I'm still working on my spirituality. Never mind.) I was kind of expecting high school students to have changed dramatically since my own Glory Days in the 1980's. However, you guessed it, all the same groups and personality types wandered through. It was so hard not to grab a few of my high-school personality doppelgangers aside and give them a bit of hard-won unsolicited advice. Just a heads-up, you know. Of course, they never would have listened. Apparently, teenagers are not only immortal, but also profoundly deaf. Thinking I would carry a bit more cachet with the youthful set if I looked a bit less mom-ish, I tried to punk up my hair a bit and wore a bit of eyeliner and lipstick. Mostly the kids were just rushing by the booths, scouting out the answers they needed to fill in on the obligatory value-added-experience worksheet. (the question for our booth? How many residents of Illinois are currently waiting for life-saving organ transplants? the answer: either 4500 or 4600, depending upon which part of the display you read.) A few stopped to chat, or, more accurately, did not run away when I asked them a few questions about their thoughts on organ donation. To add to the whole disorienting experience of being back in a gym surrounded by kids resolutely separating themselves into groups with barriers around themselves so thick you could practically feel them as they sauntered by, I actually got hit on. Whaaaaaaaaa?! No, not by a kid. Ack, don't go there. But by a fellow wellness fair volunteer, from SIU's college of medicine. Now, you may be wondering if I simply misinterpreted. I present: I walk in, pass hormonal wellness fair volunteer, who is dressed in my husband's favored style: cotton dress shirt with jeans. Smile. "How are you?" he asks (a set up!) "Just fine, thanks." "Yes, you are." (with that look - you know the one) Eeeeeeeewwwwww. I suspect he might be the type to try that one out pretty indiscriminately (and what a winner it is), but it was still a shocker and completely unexpected. Sarahlynn noted recently the strange aura of invisibility that you feel, among other things, after gaining weight. I also suspect that having 2 young kids adds to that effect. Somehow the mommy-ness ends up trumping the sex kitten every single damn time. At least for me. I'm not saying that goes for everyone. What a relief to get home after doing the time warp for a few hours. As I walked through the door, I saw Frankie headed for me at top speed in that funny little shuffle run she does now, as her stumpy legs move ever closer to a gait that doesn't make me giggle every time I watch her walk. She stopped just short of me and shouted, "Mommy! Poopy!" Then she threw her arms around my legs, burying her face in between my knees. After changing clothes and removing contacts, I did my own little shuffle (because Frankie refused to let go of my leg) over to sick Annika, installed on the couch. I bent down to her level and she gazed at me somberly, "Mama, I very missed you." Then she let loose a huge sneeze, which sent globby stuff streaking through the air, landing on my cheek and glasses, which Frankie promptly snatched from my face and shuffled away with. Yes, soooo fine.

Update: since Blogger decided that it was no longer on speaking terms with Safari, I didn't get to post this when it was originally written (yesterday). Frankie now is running a fever and grumping around the house, too. As with many things in life: Boooooo! and... Hooray! Booooo, because who wants a sick baby? Who wants to be a sick baby, for that matter? And Hooray, because now the germ theory of illness is still upheld for Annika, whose fevers are still hanging on, but continuing their slow downward spiral.

Wednesday, April 06, 2005

where bad news is actually great news

The phone rang this morning. It was Dave, Annika's transplant coordinator in Chicago, checking in on Annika. Her lab numbers, never anything to cheer about, are once again going in all the wrong directions. "But, hey," I said, "She has definite symptoms today--runny nose and a little cough!" "Wow! That's great news!" enthused Dave. "Yeah, I know!" I agreed. Our enthusiasm was definitely not tinged with any sarcasm, either. Dave was genuinely relieved to hear that a cold might be responsible for her recent non-stop fever fest. Unexplained fevers still have an ominous ring for us, with all the many hidden culprits that could cause major fevers unaccompanied by any other obvious symptoms--rejection or an antibiotic-resistant bacterial abscess are just two we have first-hand experience with. There are many other tales that other parents of chronic kids pass around the hospital hallways among themselves, in some strange version of the campfire scare stories. Except that the stories are true, which pretty much drains any adrenaline-rush thrill and instead just feeds our festering paranoiac complexes. By far the worst stories swapped by parents involved uncertainty--the times when there was simply no explanation for why their child had been struck down. Other times, the cause of the illness was clear, but the chosen treatment involved a series of educated guesses. Having lived near the edge of medicine for a while, I can tell you that a shocking amount of medical practice does not seem to be guided by some sort of official doctoring handbook, memorized during all those long years in medical training, but is instead the ever-changing result of gut instinct, previous experience, and research. All of which still sometimes failed, in terms of determining a course of action. There was a PBS special on children's medicine being filmed at our hospital during our long months there. One of the stories featured involved a mom having to decide whether or not to relist her son for a liver transplant. A second transplant, obviously, is not an ideal situation. With every successive transplant, the chances for "intraoperative demise" (the favored term used by the anesthesiologist for Anni's first transplant, and, no, I am not making that up) increase, as do the odds for "postoperative demise", for that matter. (Note to anesthesiologists everywhere: I think parents handing their children over to you for an acknowledgedly risky surgery deserve to hear the word "die" from you. Suck it up and spit it out.) For various reasons, his case was particularly risky. The doctors could not tell her what the right decision would be--it was possible that his current problems would correct with treatment, and a transplant would be rendered unnecessary. Or he could suddenly become very sick--definitely too sick to survive a transplant anymore. So the decision had to be made immediately, and the right answer was just not apparent. One of our favorite doctors at the hospital was shown, on screen, explaining that "This was where the science of medicine was gone...this is a human process at this point." This boy's case was a particularly stark one, in which the doctors really could not tell the mother with any certainty what the best course of action was, but during our entire stay I was struck with how often decisions were explained to us in a rough cost-benefit analysis. An analysis being done, I knew, on an incredibly small sample size used to determine the particular statistics on risks. Trust becomes a huge part of your relationship with your child's doctors, in other words. In the end the mom decided not to relist her son. Thankfully, his problems did resolve and he has done extremely well, given how many obstacles that tough little kid has had to overcome. His mom, on a support group I belong to, always describes her son as enjoying life with unstoppable glee. You can read more about their story here. Meanwhile, Annika continues to prove that she is mostly a normal kid. While swapping hoorays with Dave on the kitchen phone, I watched as Annika pulled up a chair to the kitchen counter. It was time for her 9 a.m. pill, so I was pretty sure that was what she was going for. We keep all of Annika's med's up in an inaccessible cabinet, except for the case that contains her pills for just that day (all 14 of them). That way, I'm not having to clamber up to get down her pills for her 5 times a day schedule, but if a child should happen to get the pills off the counter, there is only a harmless 1-day dose of them available. Since Annika has been doing ibuprofen every 6 hours to keep the fevers in check (and it really is necessary--her fevers quickly hit over 105 without it, which, along with chronically low magnesium levels, puts her at risk for seizures), I also had that on the counter. Annika is not really a great fan of the taste of ibuprofen, but she has been pretty ticked about not getting to go to preschool or the park and various other fun things. Evidently, telling her that the ibuprofen would "make her feel better," translated into her mind as "is the magic potion that will get you back out in the sandbox with Sabrina." I watched in amazement as she pushed down on the childproof cap and gave it an expert twist. I just managed to grab the bottle as she was attempting to pour it into a cup she had placed there. Evidently she had already planned this all out. "But, mom," she protested, "I want to get feeling better!" I gave a little squeak of alarm and grabbed the bottle away. Dave, father of one just a bit younger than Annika, was understanding of the interruption. I, on the other hand, was not ready for this milestone to be reached, even though we've not stored the medicines in an accessible place for quite some time. Ugh. Just a few seconds later, there was Frankie, opening the lid of the kitchen trash and energetically tossing out sodden, loose tea leaves. At this second interruption, Dave and I gave up, after confirming that Anni was indeed coming for a CT next week, and arranging for follow-up labs. Dave hung up clearly not worried about Annika, and that lack of worry always makes me feel better, too.

Tuesday, April 05, 2005

and here we go again

Annika is sick again, but we are still home for the time being. Hooray! Her fevers are pretty much non-stop, and impressively high, as usual. But negative for flu, strep, and UTI. So we're just pumping the ibuprofen. Still, she amuses me no end. As we were waiting for her turn at the lab for a blood draw, she snuggled into my lap and asked if we could change the T.V. channel to something more interesting. Again, though, there was a woman in the waiting room evidently engrossed in whatever was going on up there on the screen, so I told her "no." It turns out that this woman was watching an infomercial for a mini steam-cleaner. Soon, Annika was caught up in the excitement, too. She turned to me with glittering eyes, "You need to buy that, mommy!" "Oh, really? Why?" "Because it sparkles the house!" I guess our house is not quite sparkly enough, despite the glitter we're still finding about from a certain recent birthday celebration. After the blood draw, which she did like a champ (and also peed in the cup for me, I might note), we went to the gift shop to pick up a little beanie baby, which I sometimes do after her blood draws. Always good to keep her excited about going, I figure. She flew straight past all the snuggly kitties, dogs, baby ducks, and bears to choose a llama. And she was really very excited to find a llama, too. She wasn't just choosing it for the weirdness factor, although that might have had something to do with it. Frankie, a good sport, was OK with only Annika getting a toy, which was excellent. Maybe she's already figuring out the kind of bullets she's dodging around our household. Later, back at home, the ibuprofen started wearing off and Annika started moaning and crying a bit here and there. I told her that she still had 15 minutes left before she could have another dose (because of her possible bleeding issues, I do take the dosage times seriously). Frankie looked confused, and perhaps a bit concerned that her sister was so upset. A few minutes later, she had found her sister's llama and toddled over to offer it to her in her very first show of sympathetic solidarity with her big sis. Annika accepted it with the proper amount of gratefulness and solemnity that the moment demanded. She would have given her a kiss, but Anni has become quite concerned about "sharing her germs," so a big "thank you" was all Frankie got. Frankie was all smiles, and said "Dink Doo!" right back to her.

Still, we had one amazing weekend before the fevers struck. We spent nearly all our waking hours outside, celebrating the fantastic weather. The lawn has been mowed, the dead growth from the garden has been removed, and the forsythia is beginning to bloom. Annika spent hours in her sandbox, and has hatched a plan wherein I bury pennies and nickels in the sand so that she and Frankie can have fun all summer digging for buried treasure. She's all about the pirating right now. I also cleaned out the bicycle trailer, but discovered that my rear bike tire was not just flat, but punctured. Anni was very disappointed not to get to take a bike ride after the trailer was finally clean, but instead decided that this is the year she is going to ride a bicycle herself. This despite the fact that she hasn't even mastered her tricycle yet. Of course, I think the tricycle problem is simply that it is a poorly designed vehicle for a child with an enlarged abdomen, and it is just too hard for her to get comfortable on it. Anyway, to indulge this new whim a bit we went to check out bikes during our weekend shopping trip. The girl who favors llamas over teddy bears chose this bike. Joerg thinks that it is hopelessly cheesy, but I challenged him to find one girl's bike among the row at Wal-Mart that isn't. (I know, I know, go to a proper bicycle store...I do think the chopper is fun, though)

Monday, April 04, 2005

Anni in sunglasses (and a fuzzy headband)

This one's for Scrivener. Here's why I would write more, but am currently rocking my little fever-ridden Annika in my lap while she ooohhh's over pictures of herself.

Friday, April 01, 2005

Story hour saga. Plus more mommy guilt: there's lots to go around!

So here's the rest of the library story. After getting turned down by the library staff to do a story hour, (see two entries ago) I decided to see if the community room was available to do it independently. At first, I was told that it was unlikely, but then it turned out that there was exactly one evening in April that was available. The next day, I called our local Gift of Hope volunteer leader to give him the rundown. His feeling was that, without the support of the library staff to make it an official "Bloomington Public Library event," that we were unlikely to have much turnout at all. We talked for a while about it, and about my feeling that it was simply a topic that scared the librarians away, and we agreed that this is a project worth pursuing, but that we might have to sneak up on it a little bit. In other words, I should have started working on this last October instead of a few weeks ago. However, we also agreed that this was not something that absolutely had to be done in April, just because it's the big month for organ donor awareness and all. Being as I'm all obsessive and such, I've been asking friends of mine who have 10- and 12-year-old kids whether talk of transplants and organ donation would be emotionally and mentally distressing for them. Most of them have said that their kids (as I suspected) do already know about death, and that they think that they would be interested (in that irrepressible kid way) to know that organs could be used after death, and maybe even comforted to know that life could be brought to others even after someone you love has died. On the other hand, these people are all my friends and so are already people who respond positively to organ donation talk. And they also know me well enough to trust that I wouldn't go in and scare the bejesus out of their offspring. So I think what I need to do is to make a full write-up of what I would plan to say and include a copy of the book I would read, as well as a complete schedule for the whole 30 minutes. Maybe having it spelled out so clearly will help me convince the library staff that this can be talked about. Meanwhile, Glen (our leader) has pointed out that the month of April is already jam-packed with local activities, and so I shouldn't feel bad that this isn't getting done this month. He and his wife are just great people. They lost their son several years ago, and decided to donate his organs. Their son gave a liver to a little boy about Annika's age, but they haven't heard from that family in a very long time. So I hope seeing Annika happy and enjoying a second chance of life helps them know how much good they did, even while mourning a horrific loss.
On my on-line support group/message board, there has been some discussion about the latest case of deadly E-coli infections contracted at petting zoos. Quite a few of the first commenters were in the "hell, no, keep those things away from my immunosuppressed kiddo!" camp, and, as I've done countless times before, I squirmed a bit wondering if I was being a bit irresponsible when I let Annika go to every single animal-petting-opportunity that arose last summer. And let's not even talk about the petting zoo at our local zoo, which Annika went to at least twice each week. But always, always, with one of us following her around with a bottle of Purell. Thankfully, some other parents piped up to say that their kids were also addicted to the petting zoo experience, and that they even had their transplant team's blessing. I haven't actually asked our transplant team about this, but I certainly know what they would say. Our team is adamant that our kids should try to lead normal lives. Every time I have asked about something (doing gymnastics with an enlarged spleen, going into a McDonald's playland, etc.), they have always replied back with their mantra: "The only restriction we put on post-transplant kids is that they should not be in close quarters with someone who is sick, and to be especially careful of chicken pox and measles. Otherwise, just wash hands, wash hands, and wash hands some more." That's it. It seems like that should be a pretty simple rule to follow, but life, of course, is always making things more difficult than they should be. Keeping Anni away from kids who are sick is a mammoth undertaking. Kids are always sick in these winter months. And with the new asthma epidemic underway in these parts, it makes it even harder to know when a cough is a cough or just a cough. So when our little neighbor came over to play with Annika with a bit of a cough, I wasn't quite sure what to do. Anni hadn't seen her older hero/playmate for 2 weeks, and she was more than ecstatic to see her. On the one hand, I trusted that her parents would not send her over sick. After all, they knew Anni had just gotten out of the hospital for one of those all-kids-get-it kind of illnesses. But, still, it was a definite cough. On the other hand, she was amazingly good about always coughing right into the crook of her arm (the new preferred method) and we were playing outside rather than in the house. In the end, I decided just to fall backwards in one of those everyday living type of trust exercises, and hope that all would be well. And it was. I do have to say, though, that there are some weird social conventions about illness out there. Here's one: when Anni went to her swim lesson this week, there was another little girl getting changed with her mom in the locker room. Again, a juicy cough was coming from this little angel. Everytime I saw her chest rise with that big intake of breath before she would let one loose, my spine would give a little jerk as I tried to move my girls out of range. And every time she coughed, the mom looked at her and said, "Well, Bless You!" as if she were surprised every time - as if it were a sneeze and this was the properly polite thing to say. But of course, my mommy voice is screaming (inside, of course), "Tell her to cover her mouth. Please, please, please!" But, no, just those cute little bless you's. We work so hard at teaching our kids to be polite members of society, but teaching them to keep their germs to themselves is fairly low on the list of politeness points. Of all the very many potty books I bought when trying to convince Annika that all the cool kids loved to use the potty, only one mentioned anything about washing hands after using the toilet. One! But we're still sending Annika out into that big world. She went with her preschool class to the zoo today, and they got to touch some of the zoo animals as part of their special class. Before they went into the classroom, her teacher showed me the big jug of hand sanitizer she had brought, even before I asked her about it. I do like that woman. After their class, the kids got to run around the zoo together. Frankie and I came back to join the class on their "free zoo" time. With all her preschool friends there, Anni was very excited. But when it came time to choose someone to hold hands with as they headed off to see the animals, Annika chose to hold Frankie's hand. Even when the rest of the class was running far ahead of them, Annika tried to get Frankie to walk a little faster on her tubby little loveable stubs, but she never let go of her hand, and never left her behind.