lives be healed

I didn't go to church focused on her today.

But I've been praying lately that God would break my heart for what breaks His.

And as we sang the bridge of Hillsong United's You'll Come, during worship this morning, that's exactly what happened.

Chains be broken
Lives be healed
Eyes be opened
Christ is revealed

Singing those words, specifically lives be healed, caused the floodgates to open and I stood and wept.

For her...

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Just before the service began this morning, one of my sweet friends was asking about how DQ was doing following her surgery on Friday.  I answered as truthfully as I could.  "She's doing great.  You'd never guess she'd been under just 48 hours ago."

It's true.

In fact, within a few hours of her being home on Friday, aside from the obvious patch over her eye, she was back to her spunky little self.  And while the damage that had been done to her eye in the three years before she came home has caused some permanent damage to her optic nerve, Friday's surgery put an end to that.  Her eye is healing now.

Even further than just her eye, so much of her earthly life is healing.

But it wasn't DQ that I wept for this morning.  Don't get me wrong I could (and have before) wept out of joy and relief for her.  Today though, my tears were for a little girl who is, in so many ways, like my own precious daughter.

Both girls have a port wine stain (estimated to affect about 0.1% of the population) that covers large portions of their bodies.  And both have portions of their faces affected with the stain.

Both girls have glaucoma in their right eyes.

And both girls have (had) a very scary label associated with their adoption dossiers.  Sturge Weber Syndrome.  (type II)

But that is where the similarities end.

Because my baby girl is home with a family that loves her to the moon and back.  She's receiving the medical care she needs.  She's got a sister, two brothers, parents, grandparents, aunts/uncles, cousins and friends who adore her and will be here if/when she needs support.  She's got a family who looked past the label.

But Mariah (the Western name advocates assigned her)?  Right now she doesn't.

She's waiting for her family in an orphanage.

I've known about her for a little while.  And I tried to advocate for her.  I even got to speak with someone on the phone about living with port wine stains, glaucoma and Sturge Weber.  But there were some unanswered questions in Mariah's file.  A few things that if the answers were known may make a difference for any other family.

So I contacted Ladybugs 'N Love and requested an update.  Just when I was giving up hope of the orphanage answering my questions, I got an email from the update service.

Were my questions answered?

Every one.  And the answers offered encouragement.
(And I took those answers to experts in opthalmology and neurology with more questions and got encouraging answers from them as well).

On top of that?  I received new pictures of her.  And video.

Which means that right now I have priceless information about a precious little girl.  I know how much she weighs, how tall she is, how many teeth she has, her first words, what scares her, what provides her comfort.  I've seen her walk, and I've heard her voice...

Information that should belong to her forever mommy.  I just can't find her.

Until her mother is found, my heart continues to break.

Today I wept for Mariah.  And I pray that her family will find her soon.

More than ever this morning I realized how true David Platt's words (from his book Radical) are.

[We learned that orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they’re not real before you hold them in your arms. But once you do, everything changes ]

I may not have met Mariah face to face, but I know her name, I've seen her face, and I've met one much like her.

Everything has changed.  Today I felt prompted to share about Mariah here.

Will you join me in praying this one's wait for a family will soon end?

And if you know anyone looking for an older toddler girl to add to their family, would you send them here?

The new kid in town

 Proudly showing off her birthday nightgown.

Actually calling Darcy the new kid in town pretty much seems like it can't be true.

I mean, sure, we did have a total and complete melt-down today leading up to nap because she wanted milk and I didn't understand her (at first polite but then frantic and sobbing) request.  After I finally (with Kylie's suggestions) figured out what she wanted, we added milk to her signing vocabulary...

But other than that, it feels like she's been here in our home with us for months already. Sometimes I even find myself wondering if she and Caleb came from the same mould.

Wish they had been eating their cupcakes beside each other instead of across the table from one another (so I could have gotten both in a picture) that night ~ it was a mirror image going on for sure!

But then I have to stop and wonder if it were actually she and Kylie.

 A second "little momma" lives in the house.

 We continue to make break-throughs daily, this little one and I.  Take for instance her nightly bottle.  Which for a second I must side track and recall the complete disbelief on our guide's face when she asked us if we brought a bottle along with us and we said no.  I mean, really, she was just weeks shy of turning three.  How were we to expect that she still took a bottle at night?  But oh how glad I was that she did, bottle time is wonderful for bonding.  Except that first night she refused to let me do more than sit her on my lap.  She put her back to me and grabbed the sippy cup out of my hand (we've bought a bottle since we've come home).  But tonight as I gave her the bottle she laid back in my arms and gazed at me as she let me stroke her face.  

And many nights I wake up either with her arms around my neck, her hands on my face, or her fists wrapped in my hair.  Sure, I'm a light sleeper and all, but it warms my heart that she wants to be so close.  Because at first she wasn't too thrilled with her new mama.  Besides, one day she'll move to Kylie's room (that's Kylie's current prayer request at night ~ that "soon Darcy will feel safe to sleep in her bed in our room so we can be sisters together") and our queen bed will feel huge again.  

In addition to starting to trust me, Darcy is learning the routines of the house.  Dishes to the sink after a meal, dirty clothes to the laundry basket after bath, shoes to the closet before bed, toys put away in their respective spots.  And the funny thing is that frequently she is reminding her brother who is lost in his cars.  It cracks me up to hear her yell, "Hah!  Ge ge!"  (Hah is her little yell to get your attention, it sounds sorta like hey, but not really.  And ge ge is  Mandarin for older brother) at him across the house.  

She is also learning to endure her eye drops.  Those got started  on Saturday night.  (They would have started on Thursday night, but we decided to wait for her to be added to our insurance before we paid for the drops.  I stopped by Thursday to get them and they were going to be nearly $300.  After insurance they were $60).  By now she climbs up in my lap when she sees Ian coming with the bottle, rattling off something in Pingyao (what we were told her dialect was) and holding her hand out for a tissue.  Then comes the smile as she's also learned that in exchange for the torture that she gets two M&M minis.  

 "Maybe if I wear sunglasses Mom and Dad won't recognize me and then can't put my drops in"

Yes, she's wearing four pair.  No, it wasn't really anywhere near "drop time."  I also had to include this picture full size to document how her pants slide down.  Poor girl has no hiney to hold them up...

Speaking of eye drops, the day before we even started them, we spoke with the pediatric childhood glaucoma specialist (or rather I listened as her secretary spoke to me) and learned that we have an appointment to meet with her on the 23rd, immediately followed by a pre-op consultation, and Darcy has surgery for her right eye scheduled on April 7.  I questioned if they were going to give the drops a chance and was told that Sturge Weber related glaucoma is notioriously difficult to control with drops, so they are putting us down for one of two surgeries (to be determined during our visit with the specialist on the 23rd) but can simply cancel the surgery if the drops work.  This way we are already in the system in order to get things moving to preserve whatever vision Darcy has left in her right eye.  Sorta made my head spin.  My darling husband on the other hand was immediately on You Tube and found a video of the surgery Darcy is most likely to have.  He was like, "Hey honey, check this out!" but I saw a needle and an eyeball and decided that he could be the "family expert" on what was coming down the pipes.  I'll be there to love on my girl, but I'm not gonna watch it!

So, I said Sturge Weber related glaucoma.  Following our visit to the local pediatric opthamalogist and then our pediatrician, Sturge Weber was put on the table.  Fair enough.  Some additonal research (to help explain what it is to family) revealed the following.

"What Does Sturge-Weber Syndrome (SWS) Look Like?

The most apparent sign of SWS is a birthmark or port wine stain (PWS) on the face. The PWS is due to an overabundance of capillaries just beneath the surface of the involved areas.
When the port wine stain covers the eye and forehead region of the face, SWS should be considered.
In rare instances, SWS is present even in the absence of the PWS. SWS consists of three basic types involving a PWS on the face, eye or the brain."

One thing I want to point out is that, in our case, a child with Sturge Weber looks like any other everyday kid.

She runs and plays on the playground

and gets excited about birthdays. 

Which brings me to the visit with the neurologist.  We walked in and after he observed Darcy for a few minutes and asked me about her medical history (which of course is limited) he looked at me and asked, "So why are you here?"  And it wasn't a smart alec way that he asked.  He asked me to put my mind at ease and while he did confirm that Darcy has SWS, he gave his medical opinion (that can't be 100% confirmed without an MRI) that Darcy has Type 2 SWS.  So there it is.
(Type 2 involves a vascular malformation on the face and the possibility of glaucoma, but no evidence of brain involvement.  Recognizing the facial port wine stain is often the first sign.  Throughout the life of the individual, connected symptoms may include glaucoma, cerebral  blood flow abnormalities, headaches and various other complications.)
When I questioned him to learn if seizure activity could have gone undetected in China (which would change her classification to Type 1 which is MUCH more involved and unknown) if they were petit maul seizures he assured me that SWS seizures would be grand maul "jerky movement" seizures.  Then he gently suggested that we have an MRI scan in a few months to put my mind at ease, but AFTER we deal with the pressing issue, which is her eye.

Oh, and yes, we are planning to see what a dermatologist (we are lucky to have one of the country's leading pulsed dye laser surgeons here in our greater metro area) can do about her port wine stain.  We've gone back and forth on this one,  (Honestly I think that making decisions that can be viewed as cosmetic are loaded) but in the end have decided that if we can help prevent her PWS from thickening and becoming raised later in life that we will do it now.  I called his office as soon as we got our referral, but he is so booked up that our appointment is the first week in June.  At least we have some time to build language skills before that round of treatment begins...

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.