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3.11.2010

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.

30 comments:

Ally said...

I will say prayers for you all this week and pray that God prevails. What a wonderful heart you have and God will be right beside you and your family. Thank you for always being so "real". Truly an inspiration to us all and reminding us what our life here is "really" about. (((((HUGS)))))

Sharon said...

"May the God of HOPE fill you with all JOY & PEACE as you TRUST in Him, so that you may OVERFLOW with HOPE by the POWER of the Holy Spirit. Rom 15:18

Again my friend, I say ditto to my email yesterday. I know you already are OVERFLOWING with your beautiful family.

I agree with you...the diagnosis our kids get DO NOT define them, they are defined by who He says they are and you are fully equipped to teach her just that.

Big Hugs from TX!

Jenn said...

Oh sweet Darcy! She was knitted so perfectly together by her maker! This will all be a part of her testimony one day!

I do know exactly how you feel. KM's condition is extremely rare and before she came home I worried about all the possibilities that could be. And sometimes I still worry about anything unknown. But one thing I do know, is that the Lord is not surprised by anything and He has the most perfect plan for her! All He asks is that we follow Him. And trust Him.

Praying for you and your girl!

Blessings,
Jenn

Andrea said...

Beautifully written Kristi! She has no better advocate or mother to get her thru these tests and surgeries. Praying for peace for her (& you) today and that she would enjoy all these visits and doctors.

Larry and Carol said...

You have so much going on in your life, I wish I could come down and babysit or do something for you. Please know we are praying for all of you and especially for Darcy.
XO AC and UL

Rachelle said...

You have a great attitude with all this, and Darcy will be all the better for it. Prayers for you as you continue to figure all this out and find your new normal.

Anonymous said...

Darcy's illness will never define her. That's why God created her to be part of your family. He also knew you and Ian would do everything to help her whatever challenge He may throw your way. And I know little about her condition, but I will tell you that in my experience with neurological issues, children and adults, doctors really haven't a clue. The brain is an AMAZING organ God created and us humans can't always predict what it will do. Lori Anne (with me @ the airport) was told her son wouldn't live, then he wouldn't talk, then he wouldn't walk, and trust me, @ 4 he not only talks, but yells, and not only walks, but runs!!! So never let a diagnosis define limits. Only He knows what we are capable of. Just keep moving forward....and yes, to me she looks like an absolutley BEAUTIFUL, Normal (whatever that is) 3 year old!! I think she absolutely lights up my computer when I see her beautiful picture flash across my computer screen.....call me if you need to talk.....I would love to help anyway I can!!

Beth

Mama said...

"I know I have a plan for you declares the Lord. Plans to prosper you and not harm you. Plans to give you hope and a good future" Jeremiah 29:11. I am claiming this scripture for Darcy, you and Ian;Kylie and Caleb. We know that Psalm 139 says that we are beautifully and wonderfully made. That is true of our precious Darcy as well. I am anxious to see just how our amazing God works this all out. If you need an extra pair of hands during any of this, you know I'll be there - just let me know. I can be there in three hours.
I love you, Mama

Stacey said...

I know SWS sounds very scary and you must be overwhelmed right now. I know several children and adults who have SWS and have never had a seizure. I hope and pray she remains seizure-free. I also know children who have had glaucoma surgery and done very well. I know of another child who has had several surgeries and is blind in one eye. She has done well too.

My daughter could never tolerate pressure checks except under sedation when she was younger. She now has pressure checks when she has a laser surgery. It is so much easier to just put her under once for two procedures. I would definitely look into that possibility. My daughter will now sit still enough for a pressure check without sedation (she is 6 years old).

I love your attitude that your daughter is more than an acronym. Definitely:)

By the way, my daughter's PWS is also on her gums. They bleed easily...just to warn you:)

I'll add Darcy and your family to my prayers.

Jenny Wheelis said...

I just love you and your sweet family. Please feel my hugs and prayers for all of you from across the miles.

Jenny

Ann Marie said...

Please email me with your phone number so we can chat. We have been where you are. Please do not go it alone, let the experience and wisdom we have gained over the last 4 years benefit you. am@ronsman.com

Ann Marie

Tina Michelle said...

I feel so sad that sweet Darcy has to go through all these tests exams and surgeries but I am so happy that she has you to walk her through it. You seem like such an awesome person and terrific mom. I have so enjoyed reading your blog. You wrote this post so beautifully and I can feel the love you have for this child pouring through.

Gavin's Family said...

Your such a great mom, and you have such a wonderful Heavenly Father who will get you through this part of your life with Darcy.
Just love on that sweet girl (I don't really need to you that).
Hang in there and I will be praying today for Darcy and you both.

Anonymous said...

Sweet sweet Darcy, Aunt Cici will be praying for you as you go through all of this stuff and as you decide what defines you!
We love you so so much!
Aunt Cici and Uncle Adam

Michelle said...

I am praying for Darcy and for her entire family. I pray for comfort for Darcy during all the tests and appointments.


Blessings
Michelle

Pam said...

I have tears. Not for the SWS, but that God chose YOU to parent sweet Darcy. And that God chose DARCY as your precious daughter. And no, SWS will not define Darcy. Never. Big hugs and lots of love being sent your way.

Jess and Tim said...

Kristi--

I am going to PM you on facebook.

Jess

Dawn said...

Your story of Darcy's adoption was such a joyful one! She fits into your family and that is where she will bloom (as she already has) and grow!
I have a daughter with letters attached to her too,they are MR. She is who she was meant to be and your beautiful Daughter will become all God would have her be in your family with great JOY and Happiness! God will guide you in the choices you make for her life. Darcy is so Beautiful!!

Lisa said...

There is a term in the cancer world "The Early Dark Days." You're there. It will get better! Light WILL shine and you will all be fine. PROMISE!!!! None of this has taken our awesome God by surprise. May He fill you with His peace and guide you. May He show Himself to be strong and be glorified in a huge way through this.

I may not be able to check on you much while we are gone but please know you are very prayed for!

Annette said...

Praying for you guys as you head to the doctor this afternoon. The Lord knows every hair on sweet Darcy's head, and has big plans for your precious child.
Annette

Angela said...

I will be praying for all of you and especially Darcy. What a testimony this precious little child of God is going to have one day. "I know I have a plan for you declares the Lord. Plans to prosper you and not harm you. Plans to give you hope and a good future" Jeremiah 29:11

I am also going to send you a message on FB.

Love,
Angela

The Ferrill's said...

Oh Kristi what a perfect perfect post, and honey, God is ALREADY being glorified through this. Just the way you have ministered to me by your responses to a "not so happy report" have been such an example to me. I am learning much.
Praying for Darcy everyday...and please let me know when that MRI will be...I pray that appt. today will go quickly and that you will feel bucketfuls of God's mercy.
The Ferrill's have got your back, sister! And we are SO THANKFUL that you've got ours too!
Hugs,
Laine

Di said...

Darcy will remain in my thoughts and prayers and I hope for the best outcome for all the tests. She will as you say, remain Darcy, regardless and will it seems be a very lively addition to your family!

Our Journey said...

Saying prayers for you all this week. What a brave little girl.. It can be so hard to do all that "Dr" stuff when you get home. And you're right .. this will NOT define her!!!

C.C. said...

I'm praying for you and we are here with you.

Nancy said...

Prayin' in PA!

Jennifer Barbee said...

There's one word that overcomes any acronym.... LOVED. And sweet Darcy is loved so very well.

Melissa said...

Well said, dear friend and I will continue you praying for you, Darcy and your family. I felt like I was looking in my own heart when I read this post....hugs:)

a Tonggu Momma said...

Absolutely. Our children are not defined by their special needs. THEY define the special need... all of them, all of who they are.

Wife of the Pres. said...

First of all, BTDT.

Allow yourself to feel however you feel. It does not mean you love her any less … or make you a bad parent. Grieving for what might have been is part of the process.

Then you move on and refocus. Not that she is a different child or defined by any needs she may have, but just that YOU readjust and refocus so you can best help her become all she is supposed to be!

God has a plan for Darcy's life, plans to prosper her and not harm her, plans to give her a future and a hope!

MANY PRAYERS AND HUGS!
Leslie

email me if you want to chat about the word "syndrome" b/c it has taken on a whole 'nother meaning for me but some people just don't get it (said with a smile of course :)

cljjs (at) yahoo (dot) com