One Year Ago Today...

Greer Elizabeth

January 11, 2008

The Day our Birthmark Journey Began

Notice the date.  This picture was taken the day after Greer was born.  The day that we found out that the mark on her face (the one we thought was a bruise) was actually a Port Wine Stain (if you look closely, you can see it on the right side of her face...this is the only picture I took in the hospital that shows it).  Her delivery day was nothing but bliss and joy (pretty much!), and the day after, well it was flat out SCARY (and overwhelming and emotional and life-changing).  If I'm being totally honest here...it was HORRIBLE!  Well, it didn't start out horrible, but it went down pretty quickly...

Since I've never really given the details of that day, I'll try to take you back.  Her actual birthday had a few surprises of it's own.  Chris spent the night before delivery day in agony because of some bad pork...food poisoning to be precise.  After some massive praying (by me) and a good 'ole Phenergan suppository, sleep, and a hot shower (for him), he rallied!  Off to the hospital we went.  It turned out to be a crazy weather day (tornado warnings would send us to a room without skylights just moments before I was ready to start pushing), and I was grateful that the other kids were safe at home with my mom.  The delivery was perfect.  I think of my kids as the "Three Little Bears" when it comes to their actual labor and birth experiences.

Reeves' delivery went WAY too SLOW.  

Lucy's delivery day went WAY too FAST.  

Greer's delivery day was JUuuuuST RIGHT!!!  

I remember the bath nurse bringing her over to point out a "bruise" on her face.  I am being honest here when I say that it didn't worry me one. little. bit.  I'm a labor and delivery nurse.  I know that kids are pretty ugly right when they are born (you know they are....with scratches and bruises and funny lookin' swollen faces and heads).  It just didn't really register as something I should worry about.  To me, she was perfect (and she still is)!

We made it to our post-partum room eventually (after a bit of a postpartum hemorrhage that wasn't fun for any of us), and that's when Chris took a turn for the worse.  I pretty much kicked him out at that point.  I just couldn't handle a newborn and a moaning husband (and I didn't want to fight with him for time in the bathroom)!!!  I called his mom to come and pick him up, got my dad to call him in more phenergan, and off he went.  I ended up having a peaceful night and looked forward to getting to know baby Greer more the next morning....we both needed a good night's sleep.

I remember calling the nursery to come and get her around 4 am so I could have a few hours of uninterrupted sleep (plus I was friends with the nurses working in the Nursery that night and I knew they were dying to have some time with my baby girl...what could be better!).  I slept solid as a rock till 7 when my OB/Gyn (and very dear friend) came by to check on me.  She said the pediatricians had just come around and that they should be bringing Greer in to me soon.  I decided to take a quick shower and was looking forward to breakfast....I hadn't eaten a bite in 24 hours!

Just as I was about to take my first sip of coffee, Dr. B (Dr. I's partner) came in.  I could tell by the look on her face that something wasn't right.  

She went on to explain that she thought the "bruise" was actually a Port Wine Stain.  I don't really know if I heard much else after that... 

Humphh....

I was silent.  I didn't really know what to think.  I knew that I had heard of Port Wine Stain somewhere along the way, but I had NO CLUE what to expect from this sort of diagnosis.  To be honest....I just thought about the cosmetics at first.

Will kids on the playground tease her?

Will she feel different from her brother and sister?

Will she cry to me on Prom night because of this purple mark on her face???

And that's when I learned that she was being prepped for a CT scan, and that they had consulted opthamology....that there was a possibility of mental deficits and seizures and glaucoma and spots on her brain.  At the time, no one ever MENTIONED  Sturge-Weber syndrome.  It wouldn't be until I was home that I put all of that together.  I had a computer and internet access while I was in the hospital, but I just WOULD NOT allow myself to go there....if you know what I mean (and it's spelled G-O-O-G-L-E!)!  Nope, while in the hospital, I stuck to uploading pictures.  In hindsight....that was an amazing blessing.  I don't think I could have handled it in my fragile state.  Divine Intervention, my friends, Divine Intervention!

WHAT??? What was she telling me???  I'm a NURSE for heavens sakes...I should KNOW what the HELL she is talking about!!!

I was just numb.  And I felt REALLY, INCREDIBLY betrayed.  And untrusting, and forsaken, and lost.  And my husband wasn't even with me for HEAVENS sake (he was barfing his guts up, remember)!!!

I TOTALLY didn't go where I should have.  I went to a REALLY bad place in my mind.  I didn't even CONSIDER trusting Him in that moment.

For the first time in my life.....

I felt TOTALLY, absolutely, COMPLETELY 

a l o n e

and it was NOT pretty!!!  And that my friends...that was EVIL (aka Satan) incarnate.  Of THAT I am sure!  And, one year later....one year from that HORRIBLE day, you know what?

That ONE day in my little life taught me to trust in God like I have

never, ever trusted in HIM...

That day changed me forever.

Bet THAT'S not what SATAN was banking on!

I cried a lot that day.  I had visitors and friends by my side, but it didn't really matter.  I felt alone and didn't know what was ahead of me.  I didn't even think to pray until night fell on the 11th.  And, well, once I started to pray.  I COULDN'T stop!!!

I didn't really sleep at all that night.  I cried more than I EVER remember crying.  But when morning came....it was a new day.  A peace (the kinda peace that passes all understanding) washed over me.  I truly felt like I was IN HIS arms!  It was the most surreal feeling I have ever felt.  Plain and simple....it was God.

I literally spent that ENTIRE day alone with Greer.  No visitors, no family, barely any visits from hospital staff (my mom had my other kids, Chris was still VERY ill, and my friend Jill had asked all my friends to stay away....gotta love her!).  It's like everyone knew that I needed to be alone with my precious baby girl.  Greer had spent much of the day before away from me, and when she was there....well, I was just so numb I couldn't even focus on her (can you IMAGINE) 

That next day, we talked, and I sang to her.  I prayed over her and asked God to use us.  To use this opportunity for HIS glory.  We slept together, and I fed her, and I thanked my Heavenly Father for such a glorious baby.  MY sweet baby G!!!

And here I sit....on the anniversary of THAT day.  The day I found out that my baby girl would travel a journey that few have to travel.  During this year, I have been blessed by a community of fellow birthmark buddies (and their families) and THEY have been a Godsend.  We have made friends who will be there for a lifetime and for that I am eternally grateful.  

To read more about Greer's Birthmark Journey, please check out this link to our PWS label.  You can read all about it, and we would love your prayers.  My, my how far we have come.

GOD is GOOD!!!

Amen