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.

Saturday, February 25, 2006

wonderfully awful, awfully wonderful

The sunshine over Illinois the past few days has been more than welcome. We've opened the shades, and the girls and I played together in the little squares of light that turn the floor into a gameboard, competing with the cats for the warmest spots. The outdoors, glimpsed through the large windows that convinced us to buy this house in the first place, looks so alluring that Annika has been asking to go to the park every day. Once we arrive, though, she only spends 10 minutes or so walking around in her stiff-legged gait before asking to go home again. I usually convince her to give it 5 or 10 minutes more, in view of the delight healthy Frankie is taking in discovering her new climbing prowess. Annika keeps asking what has happened to the leaves on the trees. Her sense of time, at 5 years old, is not that well developed, but I'm getting the feeling that she understands she lost a considerable chunk of her life to unconsciousness in the PICU. I'm trying to remember if the trees actually did still have their leaves at home when we left home after her bleed mid-November. I'm thinking that, yes, at least some of them still did, in all their autumn glory. How strange this must have been for her, going to sleep months ago with a strong body and lots of regular-kid energy and then waking up on all sorts of perception-of-reality-altering drugs with a gaping hole in your tummy. And then, when the drugs are finally done and your tummy finally closed back up and you're allowed out of bed, to discover that the body you've always known has been replaced with one incapable of even carrying you over to the toilet on your own. And, all the trees were bare. Still, Annika's personality has pretty much returned to her pre-medical-nightmare days. She hasn't had a day of non-stop crying jags for quite a while. I think that's due mainly to finally getting off the methadone. But I'm sure this wonderful stretch of 11 days at home also helps immensely. I actually had to look at the calendar to figure out how many days we had been home because somehow it felt like months already. So it's not only Annika's sense of time that's been skewed by the past few months, but mine as well. And it's not only the past that's affected, but also my sense of future time. Right now each day stretches before us in lovely long swaths of time, free of beeping pumps and medical tests to prepare for. Each day feels so long, like we have time to do anything we want to do. When Jörg came home from work yesterday, I corralled him into taking a walk with me and the girls to the park down the street. We loaded the girls into the green wagon with the ridiculous little door on the side that swings open. The sides of the wagon are low enough that even Frankie, with her chunky 2-year-old legs, can clamber inside easily. But both girls insist on using the "door" in an exaggerated show of kid-world civility. Jörg and I had a chance to talk about the future along the way. It's hard for us to find a chance for these important talks, as we don't want to get too much into things in Annika's earshot, but we're often so tired by the time we get the girls to bed that we don't have the energy for such exhausting conversations. At least, they're exhausting for me, since I would rather not contemplate the future. At least, not a future involving another transplant and more bleeds and more long-term hospital stays and maxed-out insurance. I have no problem talking about normal future things, in flat-out denial of the more likely state of future affairs. So, on our walk, I broached the topic of kindergarten for Annika next year. Applications are due soon for ISU's lab school, down the street from our house. We've heard great things about that school, and we'd always figured we'd try to get Annika into it, especially since I'm suspecting that she's going to need a little extra help to be successful in school. I explained all the advantages of the lab school to Jörg as we walked along, pausing occasionally to acknowledge the excited shouts of "Dog! Dog!" coming from the girls behind us, and swerving the wagon in response to the even more excited shouts of "Dog Poop! Dog Poop!" But Jörg seemed kind of surprised that I was even thinking about putting her into kindergarten, given the precarious state of her health. Knowing that the only factor known to set off bleeds is infection, even simple colds, and knowing that having repeated bleeds is only going to make it harder for her to gain the strength she'll need to survive another transplant, and knowing that kindergarten is typically a germ factory with the little germ workers passing off infections in an impressively efficient fashion, Jörg energetically set about bursting my "life might be normal soon, you never know" bubble. As Jörg relentlessly laid out all the reasons that it was supremely unlikely that we'd be sending her to kindergarten next year, I was grateful for the surprisingly loud noise of the wagon's solid plastic wheels grating along the concrete sidewalk, which made it impossible for Annika to hear our conversation. Although that same sound was not helpful with the frustration headache that the conversation brought on. My problem, besides my persistent Pollyanna personality winning over my occasional moments of pessimism, is my skewed sense of time. [note: Lately Annika's favorite game has been for me to tell "Princess Priscilla" stories, whose point is mainly to create a narrative with as many "P" words as possible. This game totally gets in your head. Do not try it at home, unless you want to find yourself starting sentences like the first in this paragraph.] Somehow it doesn't feel like months could have gone by since Annika was waving me off back to the car, apparently embarrassed that she still had to be walked through the preschool doors by a parent. And it certainly didn't feel like the start of kindergarten was only 6 months away. A lot can happen in 6 months, but 6 months is also the rough boundary given by Dr. Superina for the earliest time he might feel comfortable transplanting her. It's all a big question mark, but preparation for kindergarten seemed to Jörg like the most preposterous form of denial.
Update on the Michael Moore discussion: It turns out that Jörg whipped off an email to the address given on his website the very weekend that we were first hit with the news that we were about to become effectively uninsured. I'm sure Jörg didn't pull any punches in the description of our ridiculous situation, in which November became the new January and the public aid office explained that Annika didn't qualify for the usual programs because she was still insured even though that insurance would pay no more claims until January 2007. But he's been careful not to blame his employer, Illinois Wesleyan University, for our woes. The university community has been very supportive and sympathetic. The university's president called Jörg almost immediately and assured him that he would look into any avenue he could to help us, and 2 of the 3 local volunteers that have stepped up to help us with running the COTA campaign are from IWU. It's not even our insurance company that's to blame, since the decision is coming from the reinsurer, Lloyd's of London, the company hired by the board of trustees for the consortium of small colleges which pools funds to spread the financial risk of insuring employees. The fact of the matter is that it's hard even to know what to say about this situation. It's hard for Jörg to meet with the financial officers of the university and explain that we've run through a million dollars worth of medical bills in just a few months, and, hey, we need more! Those kind of numbers are just unfathomable. In trying to figure out how the hell the bills could have gotten so high so fast, it's clear that it's at least partially because Children's charges us, the well-insured, at a much higher rate in order to offset the cost of all the pro bono care and services provided to the uninsured who come to the hospital. The net effect, of course, is that we have ended up being pushed into the charity care category ourselves. When I try to follow all the twists and turns in the reasoning that our current health care system requires, I end up feeling like a puppy chasing my own tail. I think there's little doubt that our health care system as it stands right now is not sustainable for those who have insurance, and is (obviously) failing miserably those uninsured. But I'm also worried that the sorts of health care reform being pushed by the current administration is only going to make matters worse; a point explained by Jane Bryant Quinn in this week's Newsweek. Frank commented that bringing Michael Moore into this discussion of our insurance disaster could be offensive to those who find Mr. Moore akin to the slime of a slug crawling across a giant field of doo-doo on a very hot summer day. While it's true that my generally diplomatic nature seeks to avoid offense, it's also true that anyone who is trying to shine on a light on the ludicrous nature of our current healthcare insurance system in this country is doing good work, as far as I'm concerned. And while it's also true that my own sense is that more is accomplished with calm and reasoned discussion than with in your face, sucker! pie throwing, I'm glad that Michael Moore is out there throwing pies. Just in case I'm wrong. (And I would also add, but only parenthetically because this is either a really stupid thing to say or else a tiny nugget of wisdom - you be the judge, that if a complete idiot like Pat Robertson, say, suddenly decided to make universal healthcare his pet project, I would heartily congratulate him and offer up our story as an example for his use. Because even idiots can get it right sometimes, and losing sight of that is no small loss.) And speaking of idiocy: The phone rang 2 nights ago. Jörg had both girls piled on him, so I answered. It was obvious from the background noise that I was getting a call from a telemarketing center, but it turned out that the caller was following up on a survey sent to us concerning our care at Children's. Always one for participating in the world of research and helpful feedback, I answered her questions as thoughtfully as I could, although I had no memory of the letter "sent a few months back" that she kept referring to. "Well," I explained, "the letter may have gotten lost in the shuffle, since Annika's been inpatient for the past few months, mostly in intensive care, so, you know, some mail probably got lost in all the chaos." Suddenly it occurred to me that I hadn't heard any keyboarding noise as I answered her questions, no indication at all that my thoughtful answers were being recorded in any way. And, finally, it hit me. "Are you getting ready to ask me for a donation to the hospital?" "Well, as you may know, Children's is a not-for-profit organization and relies..." I interrupted her, "Wait. We've just been handed over a million dollars in bills from Children's and hit our insurance max and are having to fundraise ourselves just so that we can continue to get medical care for our daughter without declaring bankruptcy and you'd like more from us?" Wow. I mean, I love Children's. I love the nurses, the doctors, the child life people who keep coming back to see Annika even when she's in a rude mood. And I know they take on expensive care for lots of kids whose parents have absolutely no way of paying and that they are worthy of donations. But, the timing. I mean, really. The past couple of evenings have seen me making what may be the cutest home movie, ever. I finally got around to gathering together the clips I took of Frankie and Lauren dancing together at the Kohl's House in Chicago around Christmastime and running them through iMovie, adding a soundtrack of Devo, Superchic(k), Cathy Fink and Marcy Marxer, Kate Campbell ("When Panthers Roamed in Arkansas" - what a title; what an opening hook), and Jack Johnson. I would post it, just out of my insane parental pride which assures me that, sure, everyone would be interested in seeing 10 minutes of my child twirling, covering her mouth in mock surprise at her own cuteness, tipping over, and then laughing, fetchingly, at herself and Lauren. But I have the feeling that a file that big might tax the generosity of IWU, which already allows me a free account for all my other (much shorter) home movies. So you'll just have to trust me that it's adorable. Instead I'll post this little gem. The first night Annika and I were back home, Frankie was very excited about me putting her to bed. Before we went upstairs, Frankie insisted that we find her favorite snuggly, a puppy, for her to hug through the night. Of course, after being away for so long, I had no idea where Puppy might be. So I just looked around for an acceptable substitute, and my gaze fell on this little orange fuzzy guy, evidently a new toy from my mom and dad. His rotund shape left it rather a mystery as to his exact identity, but when I picked him up he at least fit the requirement of suitable softness. I stuffed Unidentifiable Orange Fuzzy Guy under my arm and picked up Frankie. Unidentifiable Orange Fuzzy Guy got squeezed between my body and Frankie's, and that's when we accidentally activated his sound box. Can I express my shock without being unnecessarily offensive? Probably not. Let's just say that I glanced around the living room, just to make sure I hadn't suddenly fallen into a SNL skit poking fun at wildly inappropriate kid toys. Needless to say, I put Frankie down and spent the 10 minutes it took to track down Puppy. (But, mom, Frankie does love Unidentifiable Orange Fuzzy Guy, and I know that's what really counts.)


Blogger Phantom Scribbler said...

For the longest time we played a game where the object was to think of things that were in Poughkeepsie (and therefore started with p) and Topeka (and therefore started with t). They have terrible trouble with termites in Topeka! They have piles of pumpkin pie in Poughkeepsie! After a couple of days of that, it was all a lot of alliteration from anxious anchors around here. But I bet Princess Priscilla would have a lovely time in Poughkeepsie.

2/25/2006 1:39 PM  
Anonymous Becca - momofnataliebear said...

We got that very same call from CMH - only it was on the day we came home from transplant. The very day.

I can't see the Orange Fuzzy guy! But enjoy the sunshine.

2/25/2006 1:56 PM  
Blogger Moreena said...

Hmmm. Maybe check back later? Perhaps there were several people hitting the link at once and the server (another free account, this time from Verizon) was overwhelmed?

Anyway, you should see it. It makes me laugh, really and truly.

Oh, we could really all drive each other crazy, couldn't we?

2/25/2006 1:59 PM  
Blogger Sarah said...

Oh, that's scary. The toy I mean!

Glad to hear that Annika has been home for 11 days!

2/25/2006 2:18 PM  
Blogger susan said...

I like those alphabet games: we're just starting to play one where everyone in the car thinks of a word or two starting with the same letter (amazing, awfully, annika) and then one person has to make a sentence: Annika is awfully amazing to be always aimable while ambling on the avenue in Ann Arbor eating apples in April.

So I'm all about Princess Priscilla. And awfully happy to hear just stories from home.

2/25/2006 2:29 PM  
Anonymous peripateticpolarbear said...

Does Princess Pricilla like Polar Bears? Peripatetic Polar Bears? Pudgy, Portly, Peppy, Purple, Puppy-loving Peripatetic Polar Bears?

2/25/2006 5:45 PM  
Blogger Shelli said...

That toy?! What were they thinking? I am glad you are enjoying time with your children.

Doesn't CMH have a list of people NOT to call? I mean, really!

2/25/2006 8:59 PM  
Blogger liz said...

All our allies always adore alliterations.

2/25/2006 9:13 PM  
Blogger Rowan said...

The loss of time has got to be hard. Your descriptions are just so clear. It makes me ache simply thinking about how it must feel for Annika. Hopefully as time begins to pass in a more normal fashion, this will all just blend into the past -- for both of you.

I can't get the orange fuzzy thing to pop up either. But I'm on extremely remote dial-up. I'll try again later.

2/25/2006 11:06 PM  
Anonymous kathy a said...

we used to play a game called "the land of bob" -- in which every person was named bob, the story line featured bobbing for apples and bobby pins, the favorite song was the red red robin who kept bob bob bobbin', etc. it left my kids in hysterics every time!

glad annika's doing well and at home! glad you found the beloved puppy!

the fundraising call from the hospital is just beyond belief.

2/26/2006 11:23 AM  
Anonymous Stacy - Tanner's mom said...

Hey I just had a thought...

If the reinsurance company bases the payment on when the bill is submitted - what about having CMH hold those bills until January 1st of next year....

Ha ha! That would beat them at their own game.

Continued hope for sunshine-y days!

2/26/2006 11:44 AM  
Blogger angela marie said...

That toy. That scares me, I'm not even sure you could describe that sound WITHOUT us seeing the movie! Glad Frankie likes it.

Yeah, those mailing/phone lists. My sister-in-law was rec'g mail requests for donations from the hospice agency even after my brother died of cancer at 29. I finally called them and begged them to stop.

2/26/2006 1:48 PM  
Anonymous Hannah said...

When I first read the bit about your kindergarten-plans for Anni it just felt so right - not being 'overprotective', but letting her live an as normal as possible life of a five-year-old. How awful it must have been to realize once again that you cannot allow her this bit of normality (at least not in the next months), because you must avoid anything that could make her bleed - and you cannot be protective enough in this respect.
And still these plans for some 'normality' are so important as well, I think - make it possible not just to exist in a kind of limbo, but to actually 'live' in these days now. This seems to work for your girls right now (say the past few stories about them on your blog!) - and hopefully also many times for you and Jörg, inspite of all worries.

2/27/2006 3:00 PM  
Blogger Yankee T said...

Glad you're home, and who can blame you for the denial about kindergarten? We all want "normal" for our kids. Life doesn't seem to be about "normal" right now, does it. Thinking of you...

2/28/2006 11:48 AM  
Blogger LeighAnn said...

I know what you mean. My son had health problems and all I could do was make sure he was as safe as possible. He was the healthiest kindergarten kid alive!! I made sure he had every precaution I could think of. But keeping him out of school was something I didn't want to do. The teachers were amazing!

3/01/2006 2:05 AM  
Anonymous Sarah said...

As a teacher, it breaks my heart to think about Annika missing out on the "normal" experience of kindergarten this year, but I understand your need to keep her as germ free as possible. I do recommend that you contact your local district, however, as she may qualify for teaching outside the classroom as she will be legally old enough for school (and in some states technically required to be enrolled). We call it homebound education here in Arizona, but basically it entails some one coming to see her and teaching her one-on-one what she would be learning in the classroom (even when hospitalized). We have a post-transplant (heart) student in our school who had a homebound teacher until third grade. It allowed her to enter school with her age appropriate peers when she was healthy enough without having to be too far behind those peers. It also would allow her to start school mid-year, if she became healthy enough to do so. Just a recommendation and it might provide a sense of normalcy for everyone, especially Anni when she starts to realize she isn't quite so "normal."

3/03/2006 6:09 PM  

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