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