Another Road

 Xanthe has always been an enigma.  Of course she has;  from the outset, there was nothing we knew about her.  The first piece of information we had about Xanthe was that she had a sly, secret smile that she would only reveal to Scott.  We entered her life in her greatest moment of trauma, and it showed.  She was sick with bronchial, nasal and ear infections, and she was terrified.  Her little 13-month-old body was flaccid and weak, and she gulped each bottle of milk as if she were literally starving to death.  It was an experience so different than giving birth to a newborn that there is no comparison at all.  And if it was surreal to us, for Xanthe it was an abrupt break in everything she had come to know as life.

Just like our kids have little sense of who Scott and I were before they were born, we have almost no sense of what Xanthe's experience was before we met, so there is a whole key chapter we're missing, not to mention a vast trove of genetic and ancestral history that most people have, that is a huge blank for our little daughter.

So, when something is "off," it's hard to know just what frame of reference to use to determine what it is.  For example, it took us a couple of years to even find out that Xanthe had retinopathy of prematurity in her left eye.  We didn't know she was premature.  We didn't understand that lack of depth perception played into her extreme fear of being off the ground.  I'm not saying a biological child would be any different.  I'm just saying that medicine is one big guessing game.  Sometimes there are educated guesses, but sometimes parents and even doctors are just shooting in the dark.

And that's why we have three years of doctor visits and testing under our belts, and still haven't been able to pinpoint exactly what is behind Xanthe's stumbling blocks.  She is a wonderful, happy, normal child who has something standing in the way of learning, processing and understanding, and we don't know what that is.  This week, we had an appointment with a developmental pediatrician at the University Hospital to discuss and try to cobble together a diagnosis from all the info we have accumulated.  As it turned out, the doctor was a Chinese-American woman who came to the U. S. at age 8.  Right off the bat, she had Xanthe's confidence.  She was soft-spoken and gentle with Xanthe, and asked us both a zillion questions.

For some reason, Xanthe was a whole different person than she normally is.  She was calm and articulate, and also turned into a database of information on dates and how many days it was until our beach trip and her birthday, and how many days it had been since Chinese New Year.  And there I was trying to explain how Xanthe can't interpret the difference between "up" and "down."  I was afraid the doctor would think I was lying.  I don't know where this new Xanthe came from, but I would like her to stay!

Even with all of Xanthe's eloquence, Dr. Song consulted with some of her colleagues and came back with salve for a mother's heart.  She said, "We are worried."  She didn't even sugar-coat it with "concerned" or "We would like to see you back."  She said, "We are worried..."  I was so relieved!  The last thing I wanted to hear was another variation of "My kid does that too.  It's normal."  Yeah, if it were normal, we wouldn't be having this conversation.  If there is a problem, there could be a solution.  If I had had time, I would have completely fallen down and had a breakdown out of sheer thankfulness, but Xanthe and I both had to get to ballet, so we didn't have time for the relief to fully sink in.  In fact, I still haven't had time to sit down and feel really grateful that we are on a road to somewhere and not in another dead end.

 Xanthe suddenly became a really good reader at Dr. Song's office.  There are still few answers, but we are going to visit a pediatric neuropsychologist for some pretty extensive testing.  We feel like there is something going on with sensory processing that is creating all of these stressful situations, holding Xanthe back from enjoying her full range of capabilities.  At the end of our visit, the doctor decided to test Xanthe's iron level because Xanthe cited "her legs being tired" as a reason she couldn't enjoy things like other kids.  Xanthe freaked out when she heard about the finger prick.  The nurse and I had to pry her off my leg and then pry her fist open.  All the way home, the picked at the band-aid and wanted to talk about the finger prick.  I remember hiding under a table when I went to get my kindergarten shots, so I related.  The iron was normal, but the doc surprised me by ordering a lead test.  Just another reminder that we don't know anything about Xanthe's first year of life in a possibly lead-coated environment.

All in all, the closer we get to figuring out this darling little puzzle, the happier we all are.  Whatever happens, we know for sure that Xanthe is perfect, in her unique, individual way.  She is a daughter of God, and even if we don't have all the answers, He does.  And He isn't worried.