Thursday, January 31, 2013

Omphalocele Awareness Day 2013!

Happy O'Day!  ;)  Believe me, if you are like me, you didn't even know such a thing existed before now, right?  Just like Breast Cancer Awareness month - we have an O Awareness Day!  Sometimes I wish the FB Support Group would open to the public, so you could see all the beautiful little "O warriors".  It is truly amazing to see such little people fighting a big fight!  But I totally understand privacy in these cases.  And if you don't realize the extent of some omphaloceles, just google it!  Merritt is extremely lucky in that her lungs have cooperated through this process!  The O colors are black and white (i.e. breast cancer is pink) so Merritt is sporting her B/W colors today!

I've been planning and thinking about doing this post for awhile now.  Then after Bible Study yesterday, it sort of pushed itself to the front of my mind.  I might say some offensive things here, but I am going to be brutally honest in my thought process.  It was all part of learning to trust and totally depend on God to get me through it.  I think those horrible thoughts I had at one point served as a choice:  I could either go that direction or I could turn my eyes on Jesus and trust His plan.  

........(shew - here goes!)

Most of you know the physical journey Merritt and I went through (you can track it through Merritt's Story on the blog).  One year ago this month, we got the devastating news that our baby's organs were growing on the outside of its body.  I clearly remember saying, "a what?"  after she gave us the omphalocele diagnosis.  And yes, I used the word "IT".  For a moment, I thought I had breeded some monster.  A deformity.   It was the sick one.  It was going to be labeled its entire life as 'something that went wrong'.  I saw horrible pictures online and that's all I had to go by.   Everything was so unknown in utero - and I had no patience to wait 9 months to see what this O was all about.  Then they offered to terminate the pregnancy.  I will admit, my mind went there.  It would be SO easy to not put yourself through something like that.  And if I didn't abort, there was little chance of it surviving anyway.  I didn't pray for a miscarriage, but I definitely had days where I wouldn't have minded if I did.  There I said it.  Let me clarify:  I wanted to put it out of it's misery.  I didn't want her to suffer.  I didn't want me to suffer.  I wanted the pain and hurt to go away (for both of us) so bad, that I found peace knowing she would be in better hands with Jesus.  Then I wondered how I would think of myself 20 years from now. How could I live with myself?  I'm not a terrible person, but I felt like it. Will she read this one day and hate me for it?  Probably.  But I'm only saying it to tell you that is what I had to overcome!  I felt like I was not only battling medical issues, but demons in my head!  Obviously I didn't entertain those ideas for long... just passing seconds here and there.  I tried to stay sane. 

But little did I know that Jesus already had us in His hands.  Before I got pregnant with Merritt, I lived in a bubble.  A very nice bubble.  Ignorance is bliss.  I went to church and I prayed when I wanted to.  Then He pushed me against the wall.  I woke up every day for 9 months praying harder than I ever have.  Like they say in the Bible, "they prayed constantly"  (Acts 1:14).  I prayed constantly.  Most of those tear-filled days are so cloudy, I can barely remember them.  I prayed when I woke up, I prayed through a crying session, I prayed and literally screamed in the shower for God to fix it, I prayed in the car, I prayed ALL day, I even woke up in the middle of the night to pray!  I begged and pleaded with God.  Asked Him to "show me a sign - a blinking neon sign - that He was with me, because I felt completely alone."  

I remember walking past a few ladies in a store and I overheard " has something wrong with it...."  I even blamed myself at times...thinking I had done something to cause this.  I was fighting guilt too. 

Time.  Time went by s.l.o.w.l.y.... where looking back, God was working on my heart during that time.  Bible study this week really spoke to me.  In Acts, Jesus tells his disciples "to wait"  and "It is not for you to know times or epochs which the Father has fixed..."  A few unexplainable things happened that I never posted about because you would think I was legally insane for sure.  We found out IT was a girl.  A feisty one.  Remember the Merritt Award?   Every ultrasound gave me another shred of hope... and another answered prayer.  Suddenly I began to pray for "His will".  Good or bad, I didn't care, I just wanted God's plan.  I began to ask God, "to not take the omphalocele away, but just put His hand on it and perhaps keep it from getting any bigger." "Give her the best fighting chance she can have."  Her heart became an issue, and we started having extra cardiology appointments.  I didn't know going into one particular appointment that it was a do or die situation  -->  it came down to "if this number is [this] it means bad and if this number is [this] it means good."  Merritt was being extremely difficult on the ultrasound, and the doctor was having a very hard time getting the measurement she needed.  I think almost 30 minutes went by and we still couldn't see this particular part of the heart.  My heart sunk for the 100th time and it seemed like a dark cloud was forming over my head. Trying to pass the time, I laid on the table and said a silent prayer once again, "God, I need you with me, I need you to hold my hand, I need you to tell me its gonna be okay." (This prayer was becoming repetitive).   Then this is where I went nuts.  Like certifiable crazy.  I HEARD A VOICE IN MY HEAD.  Yep - I was hearing voices.  Call me crazy.  It was not my own voice.  And it certainly wasn't what I would have told myself in that situation because I was scared out of my mind.  (obviously).  I heard a masculine voice tell me, "It's going to be okay"...  and in that I understood it to mean - right then.  Maybe not tomorrow, maybe not months from now, but right this second in this appointment - it was going to be okay.  This particular heart test.  And within a SECOND after hearing that, Merritt turned and gave us the picture/measurement we needed - and it was okay!  It was good!  The doctor got excited and I was happy...  but I already knew it was good.  And at first I didn't even hear what the doctor had said, because my attention was on THIS VOICE I heard!  It was almost as if God told Merritt to turn when she did - because He was waiting on me to PRAY for this situation.  He was waiting to see if I was going to lean on Him before giving any answers! Timing was incredible.  I prayed - He spoke - and she turned. 

I realized God WAS WITH ME.  He was with Merritt too!  He lit up my sky - in a crazy way!  No, He wasn't going to fix the problem.  or take it away.  But He was with me and that's all I needed.  

After that I had the peace that didn't make sense.  Yes, I still had anxiety, frustration, depression, anger, jealousy, etc...but overall I knew that no matter what, all that matters is my NEW relationship with God.   We were on speaking terms again.  He kicked my feet out from under me and then pushed me into a direction I didn't necessarily want to go.  The only thoughts I had were that this world doesn't matter.  We could all die today and I'm happy knowing we will be with the Lord!  My grandfather died around that time.  And I didn't even cry at the funeral - because I was so happy that death is a good thing! He is in Heaven not fighting any battles here! I was screaming on the inside "death, where is your sting?!?!" lol!  

I wouldn't wish this medical journey on anyone.  But it has brought me closer to Him.  I truly lived each day on faith.  Faith in God that His plan was unfolding.  

And to clarify again - I can't imagine NOT bringing this sweet face into this world even with her O.... Lord knows I've got baggage.  None of us are perfect - physically or mentally.  Yes, I feel guilty for thinking the things I thought - but I think that was Satan trying to pull me away from God's plan.  He tried.  But he didn't win.  

From the bottom of my heart, thank you for all the prayers this past year!  I have seen miracle after miracle performed - and now I spend ALL my time thanking God in prayer.  Thanking Him for His mercy, His presence, His answered prayers, but most of all His LOVE.  God is love.  He loves us so much that He will discipline us like we do our own children to make us better.  I think I speak for my entire family that we are better for it.  Praise and Glory to God! Again in Acts, the apostles were told to witness what they had seen.  And I got to thinking....why hadn't I witnessed what I had seen?  I have seen how big our God is.  Merritt's omphalocele didn't appear to grow any more/bigger during the rest of the pregnancy, and it was smaller than we anticipated at birth.  He is the ultimate Healer!  After we expected to be in the NICU for several months, she stayed 21 days.  Her O was fixed for the most part, and 2 of 3 holes in her heart have healed on their own.  

We are blessed! After re-reading this before posting, I just want to make it clear - that I'm not saying "pray - and God will heal you."  Maybe he won't.  Sometimes I worry what I would feel if things had gone differently.  God didn't have to answer our prayers in our favor.  And thats a constant trigger for me to always be thankful.  I can't dwell on what ifs - because this is what I know.  I know that I know.  

"But having the same spirit of faith, according to what is written, "I believed, therefore I spoke" we also believe and therefore speak, knowing that He who raised up the Lord Jesus will also raise us up with Jesus, and will present us with you.  For all things are for your sakes that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.  Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day."   2Cor 4:13-16.

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msergent said...

Amazing post Carrie! Had me in tears all the way through. God is so very GOOD!

Erin Hern said...

What a beautiful post! I hate that you had to go thru all this but so glad to see how strong your faith is now.

Tyanne said...

Love love you both! Amazing post !

Mom said...

I love you darling daughter and admire your courage and strength. I am always with you in prayer and spirit, but knowing that your Heavenly Father is even closer. Thank you for being born to your Dad and I and for making us proud. Love.

Cari said...

love this post! I've seen God answer prayers and do something amazing things. Merritt's story will always be at the top of that list. her journey, your journey allowed us to all witness first hand just how amazing our Father is. She is so perfect!

SHARLENE said...

Carrie, I am almost speechless after reading this post. (And that is something for an author to say!) I am also sitting here thanking and praising the Lord for bringing you into my life at this particular time. Maybe it will only be for a short season - a week, a month, a few days. I don't know. But I know this. God DID introduce me to you by way of the Internet, and your encouraging emails and now this amazing blog post have lifted my spirits, allowing God to speak His comforting words into my heart. Thank you for praying for my daughter. It's a blessing to me. YOU are a blessing to me.

SHARLENE said...

P.S. I look at Merritt and the tears fill my eyes. She's GORGEOUS, God's gift.

Erica walls said...

this story is amazing.. I'm struggling with the same situation but the doctors are saying my daughter Khloe will NOT survive because her kidneys are out as well. I am truly walking by faith and not by sight.. I happy evrythng wrkd out for your daughter.