New Year's Eve, 2016

        

Annaka enjoyed some time outdoors before spending the day in St. Louis on Wednesday for what was hopefully her final lasik and albumin infusion. Her doctors were pleasantly surprised by how stable she is and expressed optimism that she is in a "good place" for next week's surgery.

We made it home in time to take the older two kids to EJHS for the luminary service. The four of us, along with Nancy and her family, stood in the center of a prayer circle made up of dozens and dozens of students, friends, and family members. A very special thank you to everyone who took part.

Reflecting back on the roller-coaster that has been our 2016, we have been constantly reminded that this climb has never been one we have walked alone, and Wednesday's experience highlighted that truth in a deep and touching way. I'm usually pretty reserved, basically to the point of weirdness, but when you listen to one adolescent after another pray for your daughter that they have never met, you cry a little. You hug people. You remember that people, all people, have a tremendous capacity for good.

Last year, on New Year's Day, we carried our little baby girl out of the NICU at St. Louis Children's Hospital and we drove her home, delightfully unaware of what the next year had in store. Tomorrow, on New Year's Day, we will head to Pittsburgh.

Our baby is a toddler now, and she has places to go.

Decorate

October ended with news that St. Louis Children’s Hospital (SLCH) was no longer comfortable performing Annaka’s liver transplant. This meant a transfer to a larger, more experienced hospital, and thus we were being sent to Pittsburgh. 

Using a metaphor that many of you will quickly understand, St. Louis is kind of like the Horace Grant to (CHP) Children’s Hospital of Pittsburg’s Michael Jordan.  SLCH is very good, but just as a basketball player might pass instead of taking a shot they aren’t sure they’ll make, Pittsburgh, with a half-century of experience, is one of the crunch-time players in the world of pediatric liver treatment. 

            Our first priority was to get Annaka listed at Pittsburgh, but to do that she had to be reevaluated by those doctors.  Thus, after about a week of trying to schedule the evaluation, on November 14^th JaLana and her mom headed East with the very patient patient in tow.       

JaLana and her mother stayed at a next-door Ronald McDonald House in the evening and went through one meeting after another during the day.  For three days they met doctors and other specialists; for three days Annaka was analyzed and studied.  They returned to Effingham with the understanding that, although it would take a while to get everything in place, she would indeed be listed for a liver transplant at Pittsburgh in the near future.

What this meant, though, was that Annaka now existed in this liver-status limbo.  St. Louis would still care for her up to the transplant and continue to offer her weekly albumin and lasik infusions to minimize the swelling in her belly.  It was also understood that about twelve-months post-transplant, once Pittsburgh believed she was well-enough and on the mend, Annaka’s care could be transferred back to St. Louis.  For much of November, however, she wasn’t listed anywhere, moving from one day to the next without a safety net.  For the first time in months, it didn’t matter how many organs became available; it didn’t matter whether we had our bags packed or not. 

This was unnerving.  To broaden Annaka’s chances, JaLana and her mother went back on the road the next week, this time to Cincinnati Children’s Hospital—which functions as the Scottie Pippen in this rather silly analogy—to go through the evaluation process there, too. Annaka again met her potential surgeons, but fortunately this time, because the Pittsburgh data was so fresh, most of the testing could be skipped.

The logic behind being listed at two different places was that these centers draw organs from different geographic regions.  Like fishermen with our nets slung off two sides of the boat, we wanted to give Annaka the best shot she had at getting the organ that would save her life.  The headache, though, behind being listed at two different regions is that every annoying thing about dealing with hospitals and insurance and scheduling was amplified.

For example, although our insurance had already approved her for transplant in St. Louis, they had to re-approve her in Pittsburgh and Cincinnati, too.  Medical flights also had to be prearranged; housing needed located.  One crucial task after another needed planned, and each task came with multiple human components, some of them warm and competent, some of them not as much.

Regardless, we were reminded once again of the aching whimsy of “free will.”  We did everything right, or, more accurately, JaLana did everything right while I did what I could to pick up the slack and stay out of her way.  From the hours of research to the hours of telephone calls, the hours spent not sleeping so Annaka could have the best nutrition possible, she made no misstep.  She knew what questions to ask and often knew the answer before the response.

Regardless, off to Pittsburgh they went.  Off to Cincinnati.   As November ended, we returned to St. Louis for an E.R. visit because Annaka had a cold and was having trouble breathing.  That was on a Monday.  We came home on a Friday. Twelve hours later, Annaka was back in the E.R., this time in Effingham because she was spitting up blood.  Back to St. Louis, this time in an ambulance.  Any last remnant of the fiction we once imagined, the fiction that says, “You are the author of your own life story,” fell out the window somewhere on I-70.

One thing that made me pause each time we returned, though, was the bright red, giant Christmas ornaments.

St. Louis Children’s Hospital, despite the pain often going on inside, is actually a reasonably cheerful place.  They decorate up for Christmas pretty good, with plenty of lights.  Outside on the small lawn in front of the building sit a collection of huge Christmas tree ornaments, as if they’d been dropped from the pocket of a holiday giant.

I remembered watching maintenance set them up last year—in the cold, the wind blowing—during our sonogram visits, back when we thought Annaka’s main problem would be the relatively minor omphalocele defect that could be patched up pretty quick.  I remember thinking, “This Christmas will be tough, but next Christmas will be better.  Next year we’ll be home.”

Annaka’s still quite sick, though, in a way we did not imagine.  A full year has passed, and still we ask these questions:

“How much control do you have over your life, really, when you’re not healthy?  How much can you influence your own life while taking care of someone whose liver barely works?”

Reflecting on those giant Christmas ornaments, though, it strikes me, finally, that these are the wrong questions to ask in the first place.  We can’t “control” our lives any more than we can control the weather.  Sometimes life is hard.  It’s cold.  The wind rattles us in directions we couldn’t imagine.

At the end of the day, we cannot control the weather. 

Fortunately, we can still decorate for Christmas.  We can do what we can to color our lives vibrant, and, more importantly, to help color the lives of those around us.

This idea brings us, then, finally, to Nancy Ervin.

As most of you know, our dear friend Nancy has volunteered to donate a portion of her liver to our daughter.  She and Annaka share the same blood type, so Nancy also went through a battery of tests in Pittsburgh to confirm that they are indeed a match.  Thus, on January 3^rd, barring any unforeseen circumstances, Annaka’s failed organ will be removed and in its place will go a fraction of Nancy’s liver.  Over time, God willing, they will both heal. 

This will be a fairly lengthy surgery with a potentially lengthy recovery time.  Despite the cold of this reality, however, Nancy is choosing to decorate the same way she has been doing for the last twelve months.  She and a host of other have taken it upon themselves to help decorate our lives with a generosity of time, resources, and spirit.

             Surrounded by such people, Annaka's second Christmas, along with each one afterwards, will undoubtedly be full of color.

Dissent

In 1787, Thomas Jefferson, reflecting to James Madison about the nature of government and American independence, said this about the value of dissent: “I hold it that a little rebellion now and then is a good thing, and as necessary in the political world as storms in the physical… It is a medicine necessary for the sound health of government."

Jefferson was referring to actual rebellions, specifically the small ones that the newly independent state governments were dealing with in the turbulent days following the Revolution.  His broader point, however, and one that he reiterated throughout his life, was that occasionally a truly free people, in order to remain truly free, would find it necessary to overturn the status quo in a serious and profound way.

This past week, over sixty-million Americans did just that.  In a turn of events both serious and profound—and, let’s be honest, shocking to most of the planet—Donald Trump was elected as the 45^th President of the United States. 

It’s real.  It has happened.  Fortunately, so far this “rebellion” has been relatively bloodless, and let’s hope it remains so.  Regardless, the world was certainly turned upside down on November 8^th, and it might remain cockeyed for the foreseeable future.

This will be another column, then, about Mr. Donald Trump, and before continuing, it’s important for me to do two simple but uncomfortable things.  For starters, I need to admit I was wrong.  Like millions of Americans, I treated the entire Trump candidacy as a bad joke.  Even when it became obvious that he was not a joke, I still dismissed the entire spectacle as just that: comedy fodder for a nation that was no longer willing to take anything too seriously, including the idea of self-rule.

The second uncomfortable thing I need to do is tell you for whom I voted.  Unlike most voters from this part of the state, I did not vote for Donald Trump.  I couldn’t.  As a father of two girls, as a husband, I could not vote for a person with such an obvious and vulgar disdain for over half the human population.  That doesn’t make me a better person than anyone who did vote for him, however, it’s just means that I believe the way a person talks about other people will ultimately influence the way they treat them, and this belief is simply more important to me personally than questions of policy or rhetoric. 

However, I couldn’t vote for Secretary Clinton and her myriad flaws, either.  Instead I voted for a write-in candidate who did not win.  In Illinois, though, that’s my luxury, isn’t?  I can be all self-righteous and what-not because, due to demographics, we all know that Illinois’ electoral votes are almost surely going to go to the Democrat, as they have since 1984.  Had I lived in Pennsylvania, though, or Ohio, it would have been my civic duty to make a harder choice.

Regardless, I did assume Clinton was going to win the election.  I had resigned myself that we were getting a bad president last week; I just didn’t expect we’d get the one we chose.

Some of my anxiety, though, has been calmed in part by the players themselves.  Clinton came out the next morning and graciously accepted her loss.  President Obama, perhaps the most vilified of all of Trump’s villains, also put on a brave face and told us all what we needed to hear:  the people had spoken, democracy would survive, the peaceful transition of power that has fascinated people for centuries would continue.

Trump, also, to his credit, dropped some of the bombast that had characterized so much of his campaign and began to strike a more moderate tone.

So, like millions of Americans, I am slowly coming to terms with these “strange days that have found us,” and part of me is starting to return to my default setting, which has always been cautious optimism.  The rest of this column, then, will focus on some reasons why.

Most importantly, I think it is crucial that we understand that most people who chose Trump voted for good reasons.  Most people who voted for Trump did not vote for him because they are racist or misogynist or xenophobic; they voted for him for one or two simple and politically legitimate motives.

They voted for him because he advocates their political views.  Regardless of how profane and unsettling a candidate is, if you’re put into a situation where you have the choice of voting for the gross reality star you agree with or the career-politician you don’t, then obviously you’re going to do your best to ignore your candidate’s shortcomings.

Trump voters also chose him because, unlike most Presidential candidates, he seriously took to task a system that everyone knows is broken.  This actually brings me to another reason why I’m optimistic, if not about Trump’s presidency specifically, but about America in general. 

For a very long time, we’ve just kind of assumed the whole thing is rigged, at least to a certain extent.  Throughout his campaign, Trump emphasized the graft behind the power structure in Washington, where sycophants on both sides of the aisle have a vested interest in a status quo President.

Trump’s supporters proved that that power structure is not omnipotent.  Although the idea of a Trump presidency is worrisome for so many reasons, there is also an anxious energy that comes from his victory.  His win proves that there remains an authenticity to self-rule that I think some people, myself included, just kind of assumed no longer existed.

 After all, if someone like Trump can win, with all his baggage, the field is much more open than many of us have quite imagined. 

Returning, then, to our third President, it’s unlikely Jefferson would have been particularly impressed by the idea of Donald Trump running the country.  A man who spent over two weeks writing the first draft of the Declaration of Independence would probably have little use for a guy whose Twitter feed reads like a scorned high school freshmen.  However, the aggressive spirit that put Trump into the White House is basically the same spirit that removed the British from colonial homes. 

 “And what country can preserve its liberties,” Jefferson asked, again in a letter to a friend, “if its rulers are not warned from time to time, that this people preserve the spirit of resistance?”

Reflections on October

This October we celebrated our nine-year anniversary.  To commemorate it a few weeks ago, we did what we’ve often done these past ten months and checked into a nice, cozy room at the Children’s Hospital in St. Louis.

On October 12^th, we received our second potential organ call around five O’clock in the afternoon.  Although Annaka and I, along with my mom, had just returned to Effingham from our weekly clinic, we repacked the car and headed back west.  We were in good spirits, though, because, after all, what better anniversary present could we get than a healthy organ for our baby girl?

Adding to the providential aura surrounding the potential moment, Gary Barnes, the same minister who had married us nine years prior, stopped by in the evening with his wife Javonda to visit a short while and to pray over Annaka the same way he had done ten months ago in the NICU.

The stars seemed to be lining up.  This time, we were the top pick, not the back up.  This time, the organ came without the frighteningly ambiguous “High Risk” categorization. 

So, after topping Annaka off around midnight with her last bottle before the morning surgery, we tried to find a short amount of rest on the tiny bed hugging our 10^th floor window.

The next morning moved fast.  Annaka’s vitals were checked for the third time, and by 8:00 we were heading down to the O.R. waiting room.  We had signed off on the consent form for both the surgery itself and the likely blood transfusion that would come with such a lengthy procedure.

On a side note, the things you are told before your child goes into surgery are truly frightening, a laundry list of statistical boogeymen, but at this point, what choice did we really have, anyway?  She had to have a liver transplant.  The fact that there’s a “one in 800,000 chance she’ll contact a communicable disease through the blood transfusion,” although frightening, is almost meaningless.

Anyway, back downstairs, with Annaka in her weirdly cute operating gown, we chatted with the O.R. nurse and we spoke to the anesthesiologist.  Down the hallway the operating team examined the donor organ itself for compatibility.  All that remained was the final “OK” from the chief surgeon.  We asked the O.R. nurse how often a transplant, at this point, was cancelled.

She shook her head.  “I’ve never seen it happen.  Once you’re down here, it’s basically a sure thing.”

Then, like a scene from the unfunniest sitcom ever, the next moment our surgeon walked into the room.  “I’m sorry,” she began, her Irish accent nearly hidden by the gloom on her face.  “We’ve been looking this thing over and over for an hour now, and I just don’t want to go on with it.  The blood vessels are damaged.  The liver itself looks wonderful, a perfect fit, but there’s just not enough blood vessels to work with to make me comfortable putting it into your daughter.  I’m afraid if we did the surgery she’d be back down here in two days with an emergency.”

Disappointment, at that point, was really an understatement.  It was kind of like…well, to be honest, there’s not really a suitable analogy to go with it.  I guess, imagine you’re a kid, and you’ve asked your parents and Santa Claus and grandma and the lady down the street for a certain toy for Christmas, and each of them said you’d get it Christmas morning.  The big day approaches, and all signs indicate you’re getting that toy.  You’ve even been so bold as to sneak into the closet and you’ve spotted the box! 

Christmas morning arrives.  You scuttle to the living room and find a gift all wrapped up, but it’s the same size and shape as that box you saw in the closet.  You can hardly contain yourself as you rip off the wrapping paper.  Victory!  It’s the toy!  You open up the box, nearly breaking off finger nails in the process.

And inside?

A picture.  Of the toy.

You’re dad comes in and picks up the picture.

“Sorry sport, they were all out.”  He explains before tossing the picture into the fireplace.  “Want some breakfast?”

It was kind of like that, except, instead of everything I just said, it’s a human liver.

Needless to say, the drive home was long, long.  Everything we packed into our car and unpacked into our hospital room had to be repacked into our car and reunpacked into our house.  We tried to make the best of it by appreciating the fact that our surgeon had been cautious; we went to school on Friday and tried to go through the day with our chins up, confident that the right organ was out there, hoping that the third time might be the charm.

Anyone who has gone through surgery knows that one element that makes waiting even more difficult is the empty stomach that goes along with it.  Annaka couldn’t eat anything for about ten hours, but she could get fluids through an I.V.  The problem was, though, that these extra fluids had extended her already-bulbous belly even tighter.

The weekly albumin and lasik infusion the following Wednesday, the 19^th, wasn’t enough to get her comfortable.  Thus, on Friday the 21^st, after a morning of Parent/Teacher conferences, we once again returned to Children’s.  We spent Friday and Saturday night in the hospital for another set of infusions, returning home early Sunday afternoon in time for the annual hayride at Liberty Christian Church.

By this time, Wade had come down with the croup, so he had to be quarantined at my parent’s house while the rest of us stayed in Effingham.

On the last Wednesday clinic of the month, the 26^th, Annaka had to be sedated in order to undergo a 20 minute CT scan of her abdomen.  The head surgeon was becoming increasingly concerned with Annaka’s very unique anatomy.  We returned home that Wednesday and received a call on Friday that yet more tests were needed.  Annaka would need to undergo a venogram; a two-hour procedure, again under sedation, that would focus on the blood movement in and around her liver.

Thus, early Halloween morning, Annaka once again traveled west, this time accompanied by JaLana and her grandma Judy.  Once again she had to be kept off food for about seven hours before the procedure.

Reflecting back on the perilous journey metaphor I’ve used since Annaka’s birth, at the beginning of October, all signs indicated that we were at last approaching the summit of this steep mountain representing the actual liver transplant.  We had no misconception about life after the transplant; we knew that caring for her once her failed liver was replaced would be a challenge in and of itself.  However, after getting two calls to St. Louis within a week of each other, after being bumped up on the PELD scale from a 28 to a 35 to a 45, surely at least this portion of the journey was coming to an end.

Something, though, wasn’t quite right.  The quick battery of tests seemed out of place.  Wasn’t this the kind of data you collect much earlier in the process?  The summit of the mountain, once sunlit, began to fade behind an unanticipated fog.

Then, like an avalanche, unexpected news:  Annaka’s internal “plumbing” as they called it, was even more complicated and broken than they once thought.  They were no longer comfortable doing the transplant in St. Louis.

We were being sent to Pittsburg.

Inertia

Back in February I wrote a column about Donald Trump. Ten months ago, the United States had reached that unsettling clove in the election season where a Trump candidacy was moving from possible, to plausible.  However, although he could win the primary if he kept his momentum, it still seemed politically unrealistic that he would actually end up as the Republican nominee.

Those were good times.

After a year of armchair analysis, it seems to me that the American population has reacted to Mr. Trump in one of three very different ways. 

For many people, the response has been a chunky mix of bewilderment, shock, nausea and remorse.  It is now, and always has been, inconceivable that our nation has somehow conjured up this charlatan to be a legitimate presidential contender.  For these people, the past sixteen months have been part SNL skit, part dystopian graphic novel where every gray panel bleeds with the shaky script, “Where are we, and how do we get out?”

It probably goes without saying that I do fall into that category.  This is not an endorsement of Hillary Clinton, mind you, who has admitted to “mistakes” that would incarcerate many of us.   However, the thought of a Trump presidency is just too astonishing for words.

            The second group of people has responded to Mr. Trump with reluctance.  They will probably vote for him, but they aren’t going to feel good about it.  They will vote for him because, as that lady in Ohio remarked last month, they are “voting for the Conservative party, and if he’s the jackass leading the mule train,” then that’s the way it has to be.  Many of these voters will vote for him because they believe—they hope—that Mr. Trump will make the same choice on specific issues, such as a Supreme Court nominee, as they would.  These are the people who simply pray every day that, if he’s elected, Mr. Trump finds a way to govern without opening his actual mouth.

The last group, though, are the true believers, the ones who honestly think this guy is fit to be President of the United States of America.  These are the ones who voted for him in the primary and who see in Mr. Trump a bold, kindred spirit.  As I mentioned ten months ago, these Americans are frustrated with the status quo and have often offered three basic arguments for Trump as a candidate.

“Trump is unpolished; he’s a straight shooter who says what’s on his mind.”

OK.  That’s all true.  Those attributes also describe my son, though, who is in Kindergarten.  Being profane, candid, and “off the cuff” are all good traits for certain jobs, such as a shock jock radio personality or a professional wrestler.  However, when you are the head of state of a 240-year-old country, you need a high quality filter between your mind and your mouth, at least in the public sphere.

“Trump is a businessman.  It’s time we got a businessman into the Whitehouse.”

First of all, his success as a businessman is both sketchy and moderate.  More importantly, however, success in business does not always translate into success in government.  These are two very different human enterprises, and casually equating them because they’re both full of mature gentlemen wearing suits is about as reasonable as believing that a great soccer player will be a great basketball player because both sports come with a bouncy ball and a set of nets. 

Yes, there are certain athletic skills that will help a person in both sports, such as speed, agility, and endurance.  Certain leadership skills, too, can find tremendous value in both the world of civics and the world of the marketplace.  Leadership skills such as intelligence, temperance, and the ability to make sound, quick decisions based on the best available data can help a person both govern and turn a profit.

The problem is, though, that as far as I have noticed, Donald Trump doesn’t really have those leadership skills.  Ultimately, the guy is a salesman, and, I’ll admit, he is good.  That doesn’t make him qualified, however, to lead the most powerful military on the planet.

Finally, we sometimes hear that “Trump’s ideas are good.”

Uh, no. No they’re not.

You cannot “bomb the __________ out” of whatever bad guy makes you mad, you cannot ban all Muslims or Mexicans or whoever from your modern society, and you cannot overturn an entrenched social program without offering up some kind of replacement.  Donald Trump’s ideas are not good, regardless of how loud he says them, and screaming about what is broken is a far, far cry from offering up policy that might actually fix it.

The reality is, though, that in a democracy, we get the leaders we deserve.  With that in mind, I will close this little diatribe with a deeper reflection on the actual nature of our republic itself.

America is an idea, and at the core of this idea is the belief in a system of self-rule designed to avoid two provocative and dueling political forces:  rule by the mob and rule by the monarchy.

 If Trump wins, one could argue that the mob has won; the loudest, angriest among us have thrashed their man into the castle. 

If Clinton wins, though, one could argue that the opposite is true.  With a former President as a spouse and a political cabal spanning the globe and spanning the decades, are we not electing a kind of queen?

Regardless, another question we should ask in this dark moment has to do, again, with physics.  Is there enough Constitutional inertia to get us another four years down the road?  Do we get another chance?

Can we find some truly gifted candidates that reflect our better natures, as opposed to the vulgarity and corruption waiting for us in the voting booth?

If you’re the praying type, you’ve already been busy.  If you’re not, this might be a good time to start.

Just Pretend

In her early years, my daughter loved ponies. We spent hours in her bedroom, galloping the little creatures back and forth from one magical adventure to the next.  We moved, later, to Disney Princesses.  Barbie came next, along with those frightening Monster High creatures, which actually brings me to the more focused point of today’s column, which is that I think my daughter might be in a cult. 

Like many very young ladies, she seems to be a devoted member of the “Cult of the Teenage Girl,” the weird, spooky little society running rampant in our culture that worships a fictionalized version of the adolescent female.

Now, as a high school English teacher, I am treading on loose gravel with this topic, so, to clarify, the “Cult of the Teenage Girl,” ultimately, is a marketing ploy designed to get my money.  If you don’t have a little girl in your home, let me explain.  A tremendous amount of the toys supposedly designed for little girls are actually miniature adolescents.

While my son gets to imagine he is a super hero in New York saving the planet, my daughter often pretends she is a sophomore in high school saving text messages.   As a teacher of sophomores, this hardly seems fair.

In fact, I’m going to go ahead and call this odd trend the sophomorization of little girl toys.  For example, those My Little Ponies I was talking about earlier?  They’re still around, prancing around on all fours and being precious, but there is also an alternate storyline where a few ponies end up going through some weird dimension portal into a world where they are walking around on their back hooves like human beings.  They exist in a high school, no less, and spend part of their time worried about boy ponies and getting a date for the dance.

The D.C. super heroes, too, have jumped into the mix.  Just a couple weeks ago we watched a very short cartoon in which a bunch of the female D.C. heroes, such as Wonder Woman, end up hanging out amiably with D.C. villainesses like Cat Woman, Poison Ivy, and even Joker’s significant other, Harley Quinn.  Again, they’ve all been inexplicably morphed into teenagers.  Why?  Because I guess being in high school is cool. 

The most peculiar sophomorization came from the Disney Princesses themselves.  About two years ago I was in the toy aisle at Wal-Mart and witnessed Ariel dolls and Cinderella dolls, all decked out with “adolescent” trinkets.  They had been glammed up, I suppose, to make them look more like teenagers. But here’s the thing: Cinderella already IS a teenage girl!  So is Ariel!  Just ask Sebastian the Crab.  Why the impulse to turn characters that are already adolescent more, well, adolescent?

The answer lies not in the age of the character herself.  Peter Parker, after all, starts out as a high school nerd.  But boys aren’t pretending to be Peter Parker.  They’re pretending to be Spider Man.  What our society expects our boys to emulate is much different, and, to a large extent, more admirable.

This brings us to perhaps the most annoying aspect of the whole deal.  Many of these fictional “heroes” my daughter has learned to imitate are often petty, loud, superficial and dumb.  These are hardly qualities I want her celebrating in her final years as an actual child.  To add insult to injury, these companies are selling toys on the mostly false pretense that being a high schooler is totally fun and little girls should pretend to be one in their spare time.

I teach in a real high school and spend about eight hours a day with real, not pretend adolescents. Most of them are well adjusted and pretty pleasant to be around, but they very rarely seem to be having the kind of super fun that would justify turning Wonder Woman into Wonder Girl.  Granted, they are at school, busy with school work, so my analysis is not exactly scientific.

The larger point though, is that with many “boy toys”—and we’ll go ahead and use super heroes again as an example—there is a clear distinction between reality and fantasy.  My son loves Iron Man, for example, but somewhere, deep within his Kindergarten mind, he probably knows that he is not really ever going to be Iron Man.  It’s pretend.  Iron Man is not real.  As he matures, the obviously fictional element behind all the Avengers will fall away from him slowly, gradually, and he will grow into adolescence with the satisfaction that many super hero characteristics, such as bravery, loyalty, the guarantee of a sequel, can translate into reasonably adult behavior without the spandex and laser cannons.

But my daughter is pretending to be a high school girl.  Since she will be a real high school girl much sooner than I want, it’s kind of a big deal to me that what she is emulating is grounded in some kind of authenticity.  Unfortunately, many of the “pretend” high school girls she is supposed to imagine herself as are grotesquely superficial.  They are often portrayed as unrealistically thin, hypersensitive about their social status, and enamored with material objects, like cell phones and high heels.

Does this describe some real sophomores in a real high school?  Sure, but very few of us would pretend as though that’s a good thing.  Very few sophomores, for that matter, would consider those ideals worth celebrating, either.

Thus, my wife and I went out on a limb recently and removed some of the snarkier programming from our satellite package; some of the Disney and Nickelodeon programs that often portray teenagers as loud, vapid, and tyrannical in their own homes.  This decision was met with anger from our daughter and a decrease in our monthly bill; two sure fire indicators that we were on the right track.

It’s a small gesture, I suppose, but in a world where “throwing like a girl” is still often shouted as in insult, every little bit helps.

Reflections on the Last Day of September

Although ultimately a disappointment, exhausting and rough on the nerves, our most recent trip to St. Louis taught us a few important things.

For starters, EATS, (Emergency Annaka Transplant System) works pretty good.  JaLana picked up the call from St. Louis Children’s hospital around 11:30 with the news:  a whole liver was available; would we be able to make it before morning?  After a brief and frantic discussion, we told them we would be there within a few hours.  JaLana called her mom to come watch the kids, and after talking her way out of a speeding ticket, she arrived in nearly half an hour.  Our vehicle was nearly packed by then, and so we poured a couple travel mugs with coffee and headed west, Annaka awake and very interested in our unusual behavior. 

We made it the hospital before the 10^th floor personnel even expected us, but for a short while nothing needed done besides unpacking.  Soon Annaka’s vitals were checked, she was given an E.K.G. and a chest X-ray.  The surgery, if we were ultimately chosen, would take place around ten the next morning.

Annaka was the back-up.  A toddler waited in line before her, but the surgeon was pretty sure the organ would be too small and Annaka would be a more suitable fit.  Regardless, both patients would need to be ready when the time came.  For the next few hours, as we waited for the morning and the news it would bring, we tried to sleep. 

We didn’t really sleep.  Once morning arrived we contemplated how best to let folks know what was going on.  It made sense to post something online, but we didn’t really have any news except that we were waiting for more news.  Then we remembered that Facebook is the same place where people upload pictures of their meatball sandwiches, so we figured a midnight run to the hospital for a potential liver transplant would qualify as post-worthy.

For hours, literally, we paced around the tenth floor with Annaka in her stroller.  It was one of the few ways we could keep her from fussing, as she hadn’t had anything to eat since a little after midnight.  This actually brings us to the next important lesson we learned.

Secondly, Annaka, like every other human ever, gets mad when she’s hungry.  We should have known that, of course, being as we are both humans and have two other humans living with us.  However, due to her condition, Annaka really hasn’t been truly hungry for the last seven months of her life.  She gets fed continuously for ten hours at night and is supposed to drink four bottles a day.  Her stomach, which is already compressed due to the liver damage, is never empty.

So, later in the day, after finding out the surgeons had decided to put the organ in the toddler, we fed her.  She gobbled up a couple ounces, which is pretty good for her.  Ninety minutes later, though, after waking from her nap, she started crying and would not be consoled. 

“You think she’s hungry?”  We asked ourselves.  “She just ate less than two hours ago.”

She was so far below her normal caloric intake, though, she actually was hungry, and increasingly unimpressed.  So we fed her and, guess what?  She stopped crying, allowing us to reclaim our rightful title as “Parents of the Year.”

Finally, we also learned, or were reminded, rather, that this whole transplant business is just heart-breaking.  We were called on Thursday night because a baby died on Thursday afternoon.  That’s the math.  I often use euphemisms when discussing the future transplant to people, telling them that surgeons would prefer a “small organ” or a “young liver,” as this would be best for Annaka’s long term health, but everyone knows what I mean. 

A baby died, somewhere in this region, and that baby’s liver was put into a toddler less than twelve hours later.  That baby’s family is suffering in a way most of us will never imagine. 

Our own hearts broke a little Friday morning when we were told Annaka would be going home without that gift.  The night had been so long; our hopes had been so high.  Someone, though, would have to miss out.  We were, after all, the back-up.  There’s almost always a back-up.  When the day comes and we’re in front, we might still be passed over for various reasons.  (That’s why they have a back-up.) 

We might do this six more times before Annaka get her transplant.  We might do it once.  Only God knows, and that understanding, for now, must do.

Summer's Almost Gone

Summer’s almost gone.

Such a comment may seem odd coming from a school teacher.  After all, hasn’t summer break been over for weeks now?  Besides that, Labor Day weekend ended our cultural summer, anyway, if not the solar one.

The phrase, though, “Summer’s Almost Gone,” is also the title and refrain of an obscure Doors song I used to listen to quite a bit.  Jim Morrison sang it as a lament, with more pathos than you might expect coming from a rock star screaming through the springtime of his own life.

Seasons—summer, autumn, winter, spring—have been on my mind lately.  I’ve been thinking particularly about the habit of using seasons as metaphor to describe specific periods of our lives.  As many of you know, our family is going through a rough season as we wait for Annaka's liver transplant.  Throughout this ordeal, we could view this season in one of three directions.

We could look down.  We could look down and focus on the negative—the sleeplessness, the hospital visits, the hours and hours on the road—and, in all honesty, at times we do just that.  There are not enough smiley cat posters in the world to fight the ugly mix of emotions that surge through you at three in the morning, when your daughter has thrown up her medicine for the fifth night in a row.

In the long run, though, such an approach seems unacceptable.  Besides the added stress, dwelling on the burden makes you a miserable person. It effectively sucks away the joy not only from your own life but from those around you.

Another, much more rational approach, then, is to look forward.  It seems reasonable to accept that your current circumstances are bad, but they are current.  They aren’t permanent.  Ice thaws, for example.  Spring arrives. Eventually.

Looking forward to the life on the other side of your struggles is a decent strategy.  With practice and concentration, such an attitude is often enough to keep a person waking up in the morning and pleasant enough for public appearance.

Something is missing, though, in that approach.  Because we are so focused on the future, on a season beyond our current circumstances, we often miss the genuine beauty in our present, regardless of how stashed away that beauty might be.

For the first few months of Annaka’s life, the looking forward strategy worked pretty well.  Once it became clear though, that the race we were running was hardly a sprint and more of a marathon, we had to reconsider our approach.

Why?

Because of her hair.

You see, Annaka is little.  Her physical growth has been so subtle as to be almost unrecognizable to the parental eye.  She also has some catching up to do developmentally.  She cannot crawl, for instance, and many of the other benchmark moments that serve as almost weekly reminders that “Hey, your kid is growing up right before your eyes” have been absent in her life.

But then you look at old pictures and you notice something.  Her hair.  She has so much more lovely dark hair than she did three months ago or even three weeks ago.

It turns out that she is growing up, after all.

She is growing up, and, besides that, didn’t her brother just start kindergarten? And what about her older sister coming home from school singing pop songs learned at recess?  The point is, life continues to move very rapidly, as it always has, and looking forward to a season beyond this present is about as unacceptable as looking down at the dirt.

With this in mind, then, we tried to start looking up. Logistically this meant that we had to train ourselves to stop dreaming about a day years down the road, post-transplant, and start focusing on the good before our eyes.

We started looking up at rainbows, for example, that met us in weird places during our two-hour treks to St. Louis. 

We started to silently celebrate other little things that made our current life worth living.

The free coffee, for instance, hidden in various spots around the hospital.  It’s not good, but it is caffeine.  Or the quiet dullness of life as an inpatient, when all you can do is nothing, really, a hundred miles away from dirty laundry, dirty dishes, or carpets that need cleaned.  And although I’ve mentioned this before, it’s certainly worth repeating:  this experience has ushered in a season of profound generosity from family and friends, neighbors and strangers alike.

However, perhaps what is most worth celebrating out of all of this is the intense attention Annaka has received from us.  After all, as busy school teachers with two other busy kids, her life would have been dramatically different had she been “normal.”  By spending so much time in the hospital and apart from her siblings, however, she has earned for herself an incredible amount of two-on-one attention that she otherwise would have had to split three ways.

None of this is substitute for a healthy liver, of course.  I’m not a crazy person or a Pollyanna.  However, it would also be inappropriate of me to pretend as though God hasn’t carved some true beauty out of this ugly driftwood of a situation.

Regardless, another summer truly will be gone in a few days, because, at our most basic, we humans do measure our seasons in relation to the sun.  Fall will bring with it less sunlight, which will mean cooler evenings that will too soon become long, cold nights.  Less sunlight, however, also brings with it the unbelievable hues of autumn—oranges and reds, yellows and tans, colors so lovely they can break your heart.

They’re actually pretty easy to see, up in the leaves, as long as you’re willing to look up.

Stability

Our most recent Wednesday clinic at Children’s was fairly productive.  The two-hour albumin infusion Annaka now gets every week, which moves much of the excess tummy fluid into her bloodstream and is followed by a ten-minute Lasik infusion that flushes it out her kidneys, worked well.  The decreased belly size allows her to breathe easier, which lets her do everything else easier, too.  She was super-talkative all evening and spent a good chunk of time chewing on her toes, a normal baby privilege in which she so rarely gets to indulge.

As always, we met with one of her doctors, who classified her as “stable sick.”  She still needs a new liver, but she isn’t really getting any worse, or at least not quickly enough to cause him concern.  Six weeks ago, however, this was not his diagnosis.  When he saw her in the hospital during her first bacterial infection of the summer, he said she would need a new organ within two months.  Well, we’re creeping up on the two-month mark and as of right now her surgeons seem confident they can wait for an organ more suitable for her size.

This is both good and bad.  Obviously we want her to get the best organ available even if it means being patient, and yes, we have struggled with all the moral and ethical grayness that desire brings with it.  At the same time, though, waiting is hard.  She is sick and we want her to get better.  Much of our lives are kind of on a “pause” button.  Her babyhood, like all babyhoods, is fleeting.  We have already watched our other two children grow up too quickly, and so we are stuck between this yearning to keep her little and an intense desire to wade through this mucky season as quickly as we can.

As always, though, each visit to Children’s carries with it yet another visceral reminder that things could be much, much worse.  It seems that in every elevator ride, we meet yet another family struggling through a diagnosis we can barely fathom.

I’ve mulled over Annaka’s ability to stay stable.  Much of it has to do with the prayers, of course, and her doctor called her a “fighter,” which I think is true.  (Anytime I get close enough, she eagerly scratches or slaps my face.)  There’s more to it than mere disposition, though.  Annaka is the product of great parenting, and what I mean by that is, she has the best mom in the world.

I know I’m biased, but consider these facts:

 For starters, her mom is basically a nurse without the crazy hours and student debt.

 JaLana’s background in science, especially anatomy, and her almost manic attention to detail makes her more than just a well-informed advocate.  When the doctors or nurses throw around all that medical terminology, JaLana actually understands what they’re saying.  She asks questions that sound like they’re coming from a med student because she has spent a crazy amount of time doing research on Annaka’s condition and a thousand other potential conditions.  Granted, this has meant she doesn’t really sleep, but it also means that she can not only care for Annaka’s current needs, she already knows what her needs might be weeks, months, years down the road.  So I’m not at all embarrassed to say that my role in all this is to play with Annaka, change diapers, drive them places, and wash the insane amount of bottles used each day.  I teach English.  I know my skill set, and it isn’t flushing the Broviac.

Secondly, her mom is a grocery store. 

JaLana chose to nurse our other two kids to good results and was determined to do the same with Annaka. Buffeted by mounds of research and multiple G.I. doctors telling her how good it was, JaLana has endured the intense schedule that providing homemade milk has required, which currently looks something like this:

Around 9:00 P.M. she expresses milk to put into Annaka’s overnight bag.  This milk is fortified with a high calorie formula especially designed for babies with liver failure.  This milk is fed through Annaka’s N.G. tube at a rate of 50 milliliters per hour.  She is supposed to get 500 milliliters overnight, so it’s a ten-hour session.

 Around 10 P.M. Annaka receives 4 different medicines and her broviac line is flushed to prevent a blood clot from forming in the line.

At 1:30 A.M. JaLana wakes up and expresses more milk.  This usually takes about fifteen minutes.  She then mixes the milk with the formula and adds it to Annaka’s overnight bag.  If JaLana is super-lucky she might be back to sleep by 2:15 A.M., but this rarely happens.

At 5:00 A.M. JaLana wakes up to express more milk.  This milk will later be frozen and stored for future use.  She has to express this milk, though, in order to keep her supply where it needs to be.  If she slows down her schedule, her body will stop producing.  This summer she has been able to go back to sleep after this, but starting next week, once school starts, she will be up for the day. 

Around 8:00 A.M. or so, she will express more milk.  This will become Annaka’s 11:00 O’clock bottle. 

Annaka usually gets off her overnight feed between nine and ten in the morning.  Because of nasal drainage, she throws up every morning.  Every day, without fail, she will throw up, often on me. Kind of gross, but it’s the only way her little body can get rid of all the mucus that has built up overnight. Somewhere between throwing up and her 11:00 O’clock bottle, we give Annaka her seven morning prescriptions.

JaLana will express again around noon, depending on the day’s schedule.  Annaka usually drinks anywhere from one to two ounces of her 11:00 bottle and then has to be tube fed the remaining two ounces.  Annaka has to get four, four-ounce bottles during the day, each of which are fortified with the high-calorie formula.  Each feeding usually takes about an hour, and is the only way she can gain any weight.

JaLana will express again in the late afternoon, around 2:00pm.  Annaka takes a bottle at two and at five and at eight, so, from two to three, from five to six, from eight to nine, she is being fed a bottle, most of it through her N.G. tube.  She is often asleep for much of this; sometimes she is awake and tries to grab her tube, or, for extra good measure, she fills her pants and leaks some on my lap.

JaLana will express again around 9:00pm to start the cycle again.  In a 24 hour period, we freeze about ten, six ounce bags of milk.  It’s insane.  If breast milk was cocaine we’d have a yacht the size of a barn.  But hey, it absolutely has played a huge part in keeping Annaka as healthy as possible, and all that frozen milk will also play a part down the road.

Finally, her mom is in her face. 

When Annaka sleeps during the day, saturated as she is by intense sibling noise, JaLana often holds her so she stays asleep, knowing she needs the rest.  When Annaka sleeps at night, JaLana takes the first shift on the couch.  (Someone has to sleep next to her in case she throws up at night, which she often does)  During the day, when Annaka is awake, JaLana makes sure she has some kind of human interaction.  This is how babies learn best, and since Annaka has so few waking hours, compared to most babies, JaLana tries to get the most out of them by reading to her, talking to her, playing with her.  I do too, of course, but I would also be content to just pop her in one of those baby jumpers on occasion.  If JaLana has anything to do with it, though, Annaka is getting talked to by someone. 

Regardless, at the beginning of this summer, we assumed the transplant would be complete before we went back to school.  I think the doctors thought that too, but here we are, less than a week from going back, looking forward to September and hoping that with it comes a new body part.