I had Selah Grace via c-section. As I laid there while they "finished me up" Brian was back and forth - checking on Selah, checking on me. We were giddy, happy, and excited.
And he said to me, "They are talking about some kind of rash she has."
And I was all, "so? Who does she look like?! How big is she?!"
And we forgot about it.
Until that next morning, when we started meeting with doctor after doctor. And they kept talking about her rash. And how it was "linear." And how it wasn't normal.
But she was so bundled up and cute, I never even looked at it.

Until the day after that when we had a doctor who was brought in from another hospital to talk to us and told us that we needed to take her to a specialist in Dallas and gave us a piece of paper with weird words...
"incontinentia pigmenti" and "conradi hunermann"
Oh, and she told us not to google it. (Yeah right)
And that set us off on an emotional roller coaster. We were never really able to celebrate her birth. It was doctor's appointments and tears and a blur of newborn chaos and 5 year old energy.
We went to our appt at the specialist's office in Dallas. Zachariah was playing on Brian's iPhone. We were given the diagnosis of conradi-hunermann syndrome. What we didn't know was that Zachariah was taking pictures with the iPhone while we were being given the news.
In a sad series of candid pictures, our devastation was documented.

And we couldn't delete them. We just couldn't.
So, we watched her rash transform in all the ways we were told it would. From white, to red, to scaly, to excema-like.
It took me a while to take a picture of the rash. But I finally did. I told myself - what if we have a 2nd baby girl some day... I wanted to remember what it looked like before it changed again.

Lastly, it was supposed to turn into a birthmark. We didn't know how dark it would be, but it would run up and down her legs in a "linear" fashion, just as the rash did.
Over and over, each doctor would show us the same illustration of our daughter's future.

And we prayed and prayed and prayed. And she was on every prayer list we knew of. And then we prayed some more.
"
God help us to accept Your will."
And even really
CRAZY prayers, like,
"
GOD PLEASE HEAL OUR DAUGHTER."
Please God.
You don't really pray until you've prayed for your own child's health.
Humbling.
After our appt with the geneticist, we noticed her rash starting to fade. All of a sudden it was gone. No birthmark. Just disappeared. Weird.
Today, January 7, 2009, we received a call from the geneticist. Selah Grace's bloodwork came back. Normal.
NORMAL.NORMAL!!!!!!!!And she was perplexed. And she had spent time brainstorming this week with the original specialist we saw back in September. Before they told us, they were trying to figure out what happened.
And no one knows.
No one knows?WE KNOW. We SO know.And the geneticist said, "So, I guess all you have is a little girl with a birthmark."
And I said, "
It's gone. It disappeared."And she said, "It did? Well, I guess then what you have is a little girl who used to have a rash."
She wants us to keep our appt with Scottish Rite. Because they aren't sure what has happened. And why. And how.
But when I asked about her opthamologist appt, she said we could cancel it. (OH, that is a huge answer to prayer in itself - those appts are HORRIBLE and PAINFUL for Selah Grace!!!! They have to do all sorts of terrible things that made me want to faint just watching!)
This is not a case of her NOT ever having conradi hunermann. She did have it. No professional we saw ever doubted that.
The bloodwork was not necessarily to tell us whether or not she had it, it was really because she DID have it, and we were going to be able to tell more about how the gene was functioning.
This is a case of a miracle.
In our little girl. This is the hand of God at work. This is the Lord answering prayer!! This is a real true life miracle that we cannot believe we have the honor of holding in our hands!!!!
We are joyful and tearful and in total disbelief!!
COMPLETE AND TOTAL DISBELIEF!!!!Neither of us have EVER witnessed this before. When doctors are speechless and confused. When they have no explanation of something that was
THERE is
NOT THERE ANYMORE!!
Please join us in grateful and humble prayer thanking Him for His amazing healing hands.
And we absolutely CANNOT thank you enough for your prayers! To put our baby on your prayer lists and your church's prayer lists... her name was lifted up by people we will never know. I mean, we are ETERNALLY GRATEFUL FOR THAT!!!!!!!! And please pass on this miracle answer to prayer. GOD CAN HEAL!!! Never doubt Him!!!!
Lord,We are in awe of You. Your power. You kept us in the shadow of your wings until this calamity passed. (Psalm 57:1) You were our refuge from darkness, and You showed Your mighty hands. Your light broke forth like the morning!!! (Isaiah 58:8) Thank you Lord. THANK YOU!!!!