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.

Tuesday, March 14, 2006

her next game was called "Princess Robot"

There are two entries bouncing around in my head. One is happy, celebratory, madly-out-of-touch-with-reality optimistic, and the other is all somber and serious. They cancel each other out, so that nothing comes to my mind when I try to put down a few words. And when I cast my net into the wider world to try to find some new perspective, I find the same swing from joy to sorrow in everyone else's lives, as well. On Jörg's usual Sunday calls to Germany, we heard wonderful news from Maja and Schäfer about a new life expected, and just a few minutes later, we heard sad news from Martin and Judit about a life nearing its completion. Our liver friends, the Martins, may finally see closure on a difficult chapter of their lives, while a different liver family, the Ketters, are viewing with trepidation a new saga in their post-transplant lives. Annika's health improvement has been like watching a little miracle unfold each day, but then my PICU friend, Angela, called to let me know that another mom in our Hospital Holidays 2005 club lost her baby to post-transplant complications. DSC03538 [Annika with Maja: Anni's already eyeing her own black leather trench] annika with judit, 5/05 [Annika with Judit, enjoying the love] Over the weekend, I did a bit of searching, trying to find people who had linked to Annika's medical fund in order to update my template with a big page of "thank-you" links. I was surprised at the number of people who commented that my journal was just too depressing, and I feel like I owe a bit of ebullience to balance out all those downer months, to myself as much as anyone. But on the other hand, my deeply entrenched superstitions hold that celebrating good fortune too soon is just like dancing on the edge of cliff, certainly exhilarating but also unquestionably risky. This back-and-forth covers not only my emotional state, but also my more intellectual moments. Last week I was sent an invitation to share Annika's story on a website formed as "a support group for parents who receive an adverse diagnosis before or after birth," and to be a parent mentor for others in the same situation. At the very end of the email was the kicker, "This is a prolife support group with people of many faiths involved." Right then I knew that I could not get involved, mainly because I believe that support groups should never involve themselves in politics, even politics involving such personal issues. Or maybe, especially not politics involving such personal issues. Either you're there to provide support, or you're there to advance a political cause, and I don't think you can do both successfully. And then, of course, there's the fact that my particular politics are pro-choice, although I certainly do not believe that terminating a pregnancy for Down Syndrome, which is what is usually caught in prenatal testing, should be automatic. (For a lovely, thoughtful take on being pro-choice and choosing to have a child with Down syndrome, check out Sarahlynn's post on her decision). Still, I was hoping that the website was not simply a new addition to the arsenal peppering guilt upon any woman who decides not to go through with a pregnancy. Because I was dithering away, flummoxed by my own conflicts, I decided to check the website out. I was pleasantly surprised to find that it mainly existed for people to explain their choice not to terminate a pregnancy in the face of devastating news, and why their choice was right for them.* Or, in the words of Michael Berube, attempting to "decrease the abortion rate by persuasion rather than by state coercion." Of course, our particular story has absolutely nothing to do with any of those scenarios. Annika's liver disease is almost never caught in even the most advanced ultrasound, and perhaps does not even begin to develop until fairly close to birth. So I really don't have anything to contribute to the discussion of choosing to have a baby with a serious medical condition or not. While Annika was in the PICU, on a ventilator, we sometimes chatted with the nurses about life with childhood liver disease. I talked about how much more difficult it was going through all this with another child so young at home. I talked about how we worried all through my pregnancy, worried that lightening might strike twice and she, too, would be born with biliary atresia. Or something else ... one of the countless afflictions that can befall hapless children in their earliest years. Our nurse was curious, would we have chosen to abort the child if we knew she would be born with biliary atresia?** We shifted uncomfortably. Everyone knows there's no easy way to answer that question. I wouldn't want to put a child through what Annika has had to go through, just to live. I mean, we were watching our child breathe on a machine. Blood was squirting out of her bottom on an hourly basis, and when we lifted her to change her diaper, tears would roll silently down her face, out of pain or fear or confusion - we had no idea which. But is there any reasonable person who thinks that saying "yes" to an abortion is easily done, either? And I would never trade my Annika for a chance at a different, healthy child, which is how the question ends up sounding, in the end, to parents in our situation. I responded that, if biliary atresia were a genetic disease and we knew that there was a reasonably high risk (say the 1 in 4 chance that two carriers pass on a recessive gene), then we would take extremely strong birth control measures to avoid exactly that question. But I have known parents who decided to give birth again, even with the 1 in 4 chance of a genetic liver disease, and have explained their decision in terms I can respect.*** I would no more take away their choice to give birth than I would take away another's choice not to. I am constantly surprised by the strength and beauty in this strange world of childhood disease. The mother who lost her baby last week was certainly the youngest I've met at a hospital. I guessed her age to be 18 or so, but perhaps she was older. In any case, I gathered that her pregnancy was, at the least, unexpected. The family of the baby's father said, publicly, some of the most venomous things I've ever heard aimed at a young mother, and it wasn't clear how much social support she had otherwise. Yet there she was, spending her days mostly confined to a hospital room with her sick child, snapping photos of him like any proud mom, learning medical lingo, never complaining (at least not in public, and not to me), and never questioning the hard work she hadn't bargained for. Was I impressed with her commitment to her child, at an age when I most certainly would have sworn up and down that I wasn't ready to be a mother? You betcha. We all were. I guess anyone that knows me, or has kept plowing through the sad times with us here on this blog, knows that I think Annika is a child worth having again. That she's a child worth another million dollars of insurance money to keep her here with us. That a child who makes up a game called "The Evil Queens of Bad,"**** in the process convincing her little sister to shout, "I'm a baaaaaaad baby! RRRRRRRRRR!," makes for one beautiful life. DSC06557 [Oh, yes. She's baaaaaad, all right. She'll jump out of a shopping bag in a dark alley and knock you senseless with her overwhelming cuteness.] So, now, if you've muddled through my muddled ramblings, you deserve to break out the champagne with us: our reinsurer has given up. All services provided in 2005 will be used toward our 2005 benefit maximum, not 2006. This means that Annika has enough insurance coverage left in 2006 to sign a contract to get her re-listed for transplant. Can I get a hallelujah?
~~~~~~~~~~~~~~~~~~~~~
*But I did not read through every story on every page, so perhaps not all the accounts were as even-handed as the ones I read. ** Note that this conversation did not just pop up one day, we had been having substantive conversations with this nurse, one of Annika's regulars, for days. Please do not think that PICU nurses suddenly decide to ask parents tough questions out of the blue. *** Not all parents have done so. My first conversation with a mom who got pregnant after being told that she had a 1 in 4 chance of having a baby with the exact same (very serious) liver disease involved the mom saying after her second child was transplanted, "I don't know why God has chosen us, but He did." There are so many things wrong with that assertion that I don't even know where to begin. I'll just stop by saying that I strongly object to ignoring genetics in favor of Divine Intervention. **** I hereby give permission for any band to adopt the name, "Evil Queens of Bad." Rock on. And, in case you're wondering about the COTA account, we've decided to leave it up for, I think, obvious reasons. If Annika's shunt surgery had taken place in January instead of November, she would be hitting her limit in the next couple of weeks. I don't think we'll ever be insurance complacent again. But rest assured that the money donated does not leave the account except for medical expenses not already covered by insurance, and, if it never becomes necessary to use the money, the funds are distributed to other children in similar situations.

44 Comments:

Anonymous Anonymous said...

hallelujah!!
miklós, judit & martin

3/15/2006 1:52 AM  
Anonymous Anonymous said...

Moreena, congratulations on the temporary end of the worst of insurance worries!! But you are quite right to keep the COTA-found.

I've never found your website too depressing, I have to say - even if some of the entries were very sad; but they were it for a reason - the stories behind them were heart breaking. People who find those stories depressing are right, but that's not due to your writing, but to the things happening around you (and us). (Well, you know that yourself...)

as always, best wishes for wonderful Anni, and also for you friends.
Hannah

3/15/2006 2:04 AM  
Blogger Eileen said...

That's wonderful news! I'm so happy for you.

Also, I don't find your site depressing. Some of it is very sad and moving, but there's a heart and an innate optimism behind your writing that, for me, makes it far from depressing.

3/15/2006 3:47 AM  
Blogger mc said...

What great news to read this morning. And I'm with the others who agree that your site is anything but depressing -- it's sad and happy and complicated, which is what life is, and you express it beautifully.

3/15/2006 5:48 AM  
Anonymous Rhonda (Carson's mom) said...

Hallelujah is an understatement! I'm so thrilled for you all!

I have been 'lurking' here for a long time, Moreena, and find your messages so incredibly written. You are writing about life...life isn't all about the great things that happen...it's about the things that happen. Period.

We have you all in our prayers...Carson loves looking at Annika's pics. We'll look forward to the potential "Evil Queens of Bad" album...maybe Annika and Frankie could pull something together?!?

Take good care ~

3/15/2006 6:08 AM  
Anonymous Beanie Baby said...

HALLELUJAH!

So so so so happy, so relieved. Common sense at last!

I can't believe that people would criticize you for being depressing. Since when did happiness become a societal obligation? And how could anyone think that it's YOU being depressing? Who could write about a situation like that without being sad?

Sheesh! Humans.

I'll email you over the weekend about the fundraising site. Not to take it down or anything, but to see if this will change its focus or the plan in any way.

3/15/2006 6:43 AM  
Blogger Rev Dr Mom said...

Hallelujah!!

Please don't ever feel like you have to apologize for being sad/depressed/pissed off or whatever. What amazes me is how upbeat and inspirational your writing in even in the worst of times.

3/15/2006 6:59 AM  
Anonymous Miche said...

Doing the Happy Dance for your hard fought and well-deserved good news!

3/15/2006 8:11 AM  
Blogger Sarah said...

Moreena,
I have been checking your blog daily for updates, hoping that everything was ok with Annika. What great news about the insurance! This must be a huge relief, to say the least. Prayers always said for Annika.

3/15/2006 8:14 AM  
Blogger Jane Dark said...

Hallelujah!

And what?! People find your site depressing? I don't recall ever thinking anything of the sort. Have I worried about Annika enough to chew nervously on my knuckles? Sure; but that doesn't make the site depressing.

You don't pull any punches, Moreena, and that's part of what makes this site great. You don't need to change anything about it, as far as I'm concerned.

And man, that picture of Frankie being "baaaaad" is too, too cute.

3/15/2006 8:29 AM  
Blogger Phantom Scribbler said...

Hallelujah! Hallelujah! Hallelujah!

Woot!

I'm so glad that the insurance crisis is resolved for the time being, and Annika can be listed for a transplant. Thank you for allowing us to share in some small measure your ups and downs. Depressing? Yeah, sometimes. But that's the way life is. And your journal is a powerful evocation of the depressing gorgeous messiness that is life.

3/15/2006 8:54 AM  
Anonymous Robyn, Emma's mom said...

Wonderful post and congrats on the insurance front!

3/15/2006 8:55 AM  
Blogger Sue said...

Hallelujah! This is such great news!!!

I'm with the rest of the commenters here -- I can't believe anyone would call your site depressing.

Wishing you, Anni, and your whole family much peace...

3/15/2006 8:58 AM  
Anonymous Lauren said...

What wonderful news! I'm so glad the reinsurers screwed their heads on right!

I agree with the rest of the posters that you take some of the hardest news and present it in such a way that we *do* come back to read more. Despite all the (unavoidable) negative, you always leave us with hope. You truly have a gift for writing - Thank you!

Give Anni and Franki a hug for me!
Love, Lauren

3/15/2006 9:13 AM  
Anonymous Jamie said...

Oh Hooray! Hooray! Hooray! Hooray! What else is there to say?

And, your site isn't depressing. Your site is real. How would one expect one to think and act and react when dealing with such a serious illness? partiularly in one's child. I suspect most people would be all sunshine, roses and lambs. I wouldn't be.

But I'm happy for you. I imagine you feel as though you weigh a thousand pounds less.

3/15/2006 9:20 AM  
Blogger Mommygoth said...

I am doing a giant happy dance at my desk! YAY for insurance! YAY YAY YAY YAY YAY for Annika!

3/15/2006 9:27 AM  
Anonymous Rachel said...

Moreena, I am here to just say I am SOOOOOOOO happy for you and the family! I am glad the re-insurer has given up and that Annika's coverage will allow her to get the transplant. My thoughts are with you all!!

3/15/2006 9:31 AM  
Anonymous Genevieve said...

HOORAY!!! Hallelujah! Huzzah!!

I am just thrilled to hear it. So glad that the reinsurer finally gave in and did what they were supposed to do. And hooray for you and Jorg for keeping the pressure on them till they did!

Best wishes to Anni and Frankie, the Queens of Evil (they absolutely will stun you with their cuteness, no question).

3/15/2006 9:41 AM  
Anonymous Genevieve said...

Sorry, make that the Evil Queens of Bad. Much more interesting name.

3/15/2006 9:42 AM  
Blogger Mike said...

I sometimes use the word "God" as shorthand for a whole bunch of things too big for words, but I don't think I could ever write a sentence like "God chose us" without it looking more like "God* chose** us***" and having some seriously long footnotes.

Oh, and maybe some folks find your stories depressing, but I find that reading your site takes the scariest thoughts about having kids and, by showing how you all handle them, makes them less scary.

So rock on.

3/15/2006 10:05 AM  
Blogger halloweenlover said...

I burst into tears in my office when I read that the insurance would pay. I'm so happy!!!!

I'm so sorry for those around you going through such terrible times, though.

3/15/2006 10:05 AM  
Blogger Michelle said...

Congrats on the insurance issue being straightened out. Also, I have never found your site depressing in any way. The edge that you teeter on between joy and sadness should be told and I must say you do a great job!

3/15/2006 10:30 AM  
Blogger Amanda M said...

and so you bury the punchline, the most important bit of info near the end! Hallelujah indeed!!! So happy that the insurance debacle ended up on your side...what a huge, huge relief. Words don't begin to cover it...

Oh what a burden lifted that is...

3/15/2006 10:43 AM  
Blogger ccw said...

Wonderful news about the insurance!

3/15/2006 11:11 AM  
Anonymous The Ketters said...

Hallelujah!!Hallelujah!!Hallelujah!!Hallelujah!!

Oh, I am so crying right now!!! I cannot believe you waited until the end of the post to tell us....

Love to those beautiful queens of the bad...

3/15/2006 12:02 PM  
Blogger Uccellina said...

Hallelujah indeed!

*bouncing up and down at desk*

3/15/2006 12:13 PM  
Anonymous Anonymous said...

Don't write for other people...write for you and your family, for catharsis.

I got shivers when I got to the 'celebratory' part!!! HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I think that WAS divine intervention...after all I've been praying over that insurance situation!

Great to read that good health continues!

3/15/2006 12:25 PM  
Anonymous Nikki said...

GREAT!

Your blog is not depressing. There are few people who can write with such grace and intelligence about the stuff your family goes through.

3/15/2006 1:11 PM  
Blogger Sarah said...

I have to echo the other comments that your blog is NOT depressing. It is one of the most inspirational things I have ever encountered. The way that you take your little girls lives and make them joyful despite the terrible things that surround them should be commended, not criticized. If you sugar coated your experiences, they wouldn't be real and we would all know that it was fake - and so would your girls. You've let your children LIVE instead of just exist. What a wonderful gift!
And Hallelujah!!! It is not lost on me that the important parts of your life came first on your blog - as in your girls and your emotions - and the financial junk came last.

3/15/2006 1:19 PM  
Anonymous Anonymous said...

Please don't feel obligated to maker your entries "happier" for your readers. This is your blog; if they think it's too depressing to read, then why don't they just not read it? I cannot believe that people would even bother you by telling you they think it's depressing- you should be worrying about your family, not having to worry about if your personal blog is "uplifting" enough for others to read. Besides, if they think reading the details of your journey is depressing, what do they think it's like LIVING them? I found your site through a maze of other sites, and I continue to read it because I think you are a fabulous writer and I love seeing the happy stories, like solving the insurance problems!

Love and prayers from a friend also living in this world of childhood illnesses : )

3/15/2006 1:36 PM  
Anonymous Anonymous said...

HALLELUJAH!!! Great news!

I'm so glad Anni continues to improve! And little Frankie - look how long her hair is getting. Could either of them be ANY cuter???

I too do not find this site depressing. Yes, sometimes it makes me cry because of Anni's illness and what all you and your family have been through. And the child who died. Those things are terribly sad but then you turn around and write something that Anni has said - and most times, before the end of the post - I'm laughing again. Personally, I think your site brings alot of joy to the cyber world. Anni seems to be a joyous child who embraces life wholeheartedly despite the illness she deals with. I call that TRIUMPHANT not depressing. The way you and your family have dealt with all this is encouraging - not depressing. You write what YOU need to write - and don't worry about the readers.

tina

3/15/2006 1:46 PM  
Blogger Mrs. Coulter said...

Oh my god, I am so relieved that the insurance company relented.

There have been times, reading what you write, when I have welled up with tears. Because your writing is beautiful and touching. Yes, there is much sadness in your story, but depressing? Depressing and sadness are not the same thing. It would be depressing if you just gave up. Which you haven't. So it's not depressing at all.

3/15/2006 2:05 PM  
Blogger ivoryfrog said...

Like everyone else has already said your blog isn't at all depressing. Obviously some of the entries have been sad but I have never found your posts depressing. What an odd thing for someone to say. I wish I was as good with words as you are, I can never seem to express myself right, you do it so beautifully.
I don't think I have posted a comment here before now(have I?), but I have been lurking - you have been on my blogroll for a while now and I read everytime it tells me you have updated. :-)
So happy for you all that the insurance situation has all been sorted out!
Hugs to you all
Ivoryfrog x

3/15/2006 2:16 PM  
Blogger Eryn said...

Hallelujah! From a long time lurker!
I am so glad to hear the good insurance news!

3/15/2006 3:17 PM  
Anonymous Anonymous said...

I agree with Sarah - your blog is more inspiration than depression. I lurk periodically and pull a lot of strength from your thoughts and experiences. I am beginning to learn what it is like to have a chronically ill (not life threatening) child. I wish I could cope with your Grace!

Nataliebear's friend, Gerilyn

3/15/2006 3:32 PM  
Blogger Kathryn said...

Hooray! Hallelujah! AND praise the Lord :-)
This is such wonderful news...just wish you'd not had all the anxiety first, even if it does make us all appreciate the change of heart so very much.
And, depressing?? No way...You have an amazing capacity for emphasising the positive in the most hideously painful situations and your overwhelming love for your children shines through every post you write. That's why people like me, who will probably never meet you irl, care so hugely and deeply about the fate of one little girl on the other side of the Atlantic. One very special little girl, it must be said. Thank you for sharing her story with us.
Hugs, loves and grateful prayers xxx

3/15/2006 4:15 PM  
Anonymous Crystal said...

Hallelujah! I am so happy for you. One note about COTA. If I understood correctly, it is there for Annika for a LIFETIME! Even into adult hood, she can use that money for any medical expenses she may incur. Just wanted to let you know!

3/15/2006 6:30 PM  
Blogger Laurie said...

Oh Moreena! Wonderful news about the insurance!
When I put Anni's pic up for the fundraiser I do, people read the little bio of her and say, "Oh, how sad... how can you read that?" And I always rush to tell them, that it can be sad, but it's also so funny, and Anni is so courageous and smart and silly and inspiring. I want people to know that there is so much more to you and your family than just Anni's illness. I hope a few of them have come to read about you all. If they have gotten even a teensy little bit as much as I have gotten in reading you over these past months, they are SO much richer for it!
(I also read the next update and DAMN! I'm praying it's just something little and easily fixed/dealt with stopped.)
XOXOXOXOXOXOXO

3/15/2006 7:21 PM  
Blogger Rowan said...

Oh my freakin' goodness! That's the best news I've heard all day. And my best friend just called me to tell me that she'd had her baby.

I am so elated for you. I'll take all the "depressing" woes to see a glorious post like this one.

Hallelujah.

I'm so blown away that I can't come up with anything intelligible to say for the rest of the post. So I'll have to come back later, after I've processed this.

3/15/2006 7:23 PM  
Blogger LoriLaurieLauri said...

HALLELUJAH and WHOO-HOOOOOOOOOO!!! Yes, Annika is worth every penny!

And definitely keep the COTA fund going...I certainly hope you never use it, but keep it going! And I am proud to have contributed to it!

3/15/2006 8:16 PM  
Blogger Laurie said...

Hallelujah!

3/15/2006 8:45 PM  
Blogger liz said...

Hooray for insurers backing down and for the Evil Queens of Bad!

3/15/2006 10:02 PM  
Anonymous Candace said...

So happy to hear you get to have a break in your insurance worries!

I'm also surprised anybody would call this site depressing. You're going through your child's serious illness and you're also supposed to be, what, perky? Your writing is beautiful and uplifting and I'm always amazed at your sense of perspective.

3/16/2006 8:09 AM  
Anonymous Anonymous said...

"I was surprised at the number of people who commented that my journal was just too depressing, and I feel like I owe a bit of ebullience to balance out all those downer months, to myself as much as anyone."

I hate to say this but to those people my first comment is, 'Get a life.' My second comment is for pity's sake, this is your blog, this is your place to write down what you are feeling and like others, I don't find the entries depressing. As rough as things have been, your resiliancy far outshines whatever is depressing.

I hold all of you in prayers.

3/18/2006 12:55 PM  

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