An acronym

**I've sat on what we learned Monday for a couple days to help me process it all.  Because then I was in a near state of panic as I tried to absorb everything that I heard.  Today, not so much.

Long story short, her vision outlook isn't so good. We do know that she is nearsighted in both eyes.  (She tolerated that part of the exam very well).  Just slightly in the left, and drastically in the right.  Glasses would help, for now anyway, but not until the pressure in her right eye is relieved.  Because she does indeed have glaucoma.  Advanced glaucoma.  Like they are going to have us go ahead and start drops before getting the pressure reading because it is obviously so bad.  The doctor looked at her from three feet away and confirmed that. He was even almost able to get a pressure reading ~ almost.  He used the word "stoic" to describe my sweet girl and how she sat so still for so long.  But since at the end she was having no part of it, we are left with getting a pressure reading (and he called this afternoon and gave me the name of another test his mentor wants to have run, but the kids were fighting over the one Dora helmet and I didn't get to write it down as soon as he said it) under sedation.

And no anesthesiologist wants to put a child under when they have two of three classic signs (port wine stain on the face and glaucoma) of a neurological disorder without knowing the brain involvement.  So we got hurried in to our pediatrician yesterday in order to get referrals to a neurologist (for an MRI), dermatologist (for the pulsed dye laser treatment to lighten her birthmark), and pediatric opthamology surgeon (because the first opthamologist is very doubtful that the drops are going to work).

At the pediatrician Darcy was checked from head to toe.  Overall, if you take out the vision issues, she checked out as a very healthy, normal kid.  She's at the 80th percentile in weight, and 92nd in height.  (What is it with me and tall girls?)  Sure, she has a large birthmark that encompasses much of the right side of her body, even her right eardrum and gums are darker than the left side, but beyond that she looks and acts like any other newly turned three year old, jumping off the bottom stair, feeding herself, putting on her own shoes (often on the wrong feet), chatting up a storm.  And yet yesterday she got an acronym attached to her name.  SWS


Sturge Weber Syndrome.  It doesn't really come as a surprise.  Sturge Weber was the closest thing we could pin point from reading her referral information (which if you've been around long enough will recall me saying that I researched the syndrome they "gave her" and found nothing ~ described in Mei Mei's Story Part 3).  When our pediatrician reviewed her file for us he pointed us toward Sturge Weber Syndrome saying that it was the closest thing that made any sense.  Then we did our share of research.  Lots and lots of internet research.  Some of what I read didn't seem so bad, and some of it was pretty scary.  And then finally we stopped reading.  We realized that God had confirmed for us in so many ways that QingYou was indeed our Darcy.  And so we decided to claim that since He called us to be her parents that He would give us the grace we need in order to live up to that responsibility.  Because He can sustain, in all situations, no matter what.


Right now though, I'm torn between two opposite ends of the spectrum.  On one end I'm very upset because I desire the very best situation for my child.  Which I think is respectable enough.  Don't we all as mothers want the very best  for our children, especially when it comes to health?  Don't we hear all the time folks saying, "Well, just as long as they are healthy..."  Obviously I wish that the opthamologist wasn't already predicting surgery in her right eye and that I'd never even heard of SWS.  But then of course that means that I likely wouldn't be listening to the rhythmic breathing of a precious three year old girl laying beside me in my bed, and I just don't want to go there...

On the other end, I'm realizing that in the grand scheme of things we are lucky that we are looking at potential loss of vision in one eye and an acronym.  There are probably many parents out there who wish that they were in my shoes as they make one more visit to the oncology department or the cardiology floor of their local hospital.

And so I'm waffling between the two, trying to figure out how I feel. 


What next?  Well, right now in the wee hours (thanks to the insomnia side affects of my medication) I'm reading up on Sturge Weber related glaucoma, coming up with questions for our neurology consult (which is today at 2:15), and of course praying.  Praying that God will be glorified in it all.  And as soon as she wakes up, you'd better believe that I'll be taking a while to play with and hold my precious girl.  After all, SHE is my focus, not her acronym... 

One thing I can say for certain is that SWS is simply going to be another acronym that describes our beautiful girl.  But SWS is not going to be what defines her.  We'll let Darcy determine what defines her as she grows up as a beautiful child of God.