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.
[Annika with Maja: Anni's already eyeing her own black leather trench]
[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.
[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.