Monday, March 17, 2014

GUEST POST: GETTING MY BABY'S CYSTIC FIBROSIS DIAGNOSIS

As I mentioned yesterday, I am sharing some guest posts this week while John and I are out of town.  First up is my best friend from childhood, Carmen Smith.  So many of my growing up memories are intertwined with Carmen, because we spent almost every afternoon together for all of elementary school as pseudo-sisters.  We would walk to my house from school and play until her Mom came to get her.  We dreamed and schemed.  We wrote plays together and managed to perform them in front of our whole school.  We dressed up together for several Halloweens - here we are as a Cat and Mouse.

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All of my life, God has richly blessed me with friendships, and I am so thankful that I can still call Carmen a great friend.  She has recently entered the ranks of motherhood by having her precious first son, Crosby and started blogging at The Crosby Show.  It has not been an easy road, and I asked Carmen if she would be willing to share how God is working through this season of her life.  She so very graciously and honestly told her story.

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When my son Crosby was 15 days old, he was diagnosed with a life-shortening, incurable illness - Cystic Fibrosis.

To say that day will go down as one of the hardest days of my life, would not be an overstatement. Receiving the devastating news that Crosby had CF was shocking, overwhelming, and isolating. On a cool day in early October, in a matter of a couple of hours, my entire world was flipped upside down. I remember leaving Arkansas Children’s Hospital that day holding my perfect baby and a binder full of medical pamphlets feeling beaten down, with a red face and puffy eyes, and in disbelief from the bomb that was dropped on us.

And then I completely shut down.

People react differently to hard news. Some people run to God and beg him for mercy, grace, and hope. Some people fall to their knees and turn it all over.

Not me.

I gave God the middle finger.

Yep, I was so mad, so distraught, so despondent and so disgusted, that I cussed at God.

And then, I gave him the silent treatment.

I ignored Him like we were in middle school and had a falling out over unshared French fries or a mutual crush. I refused to pray. Like Mel Gibson’s character in the movie Signs, I decided to not waste one more minute on prayer. I was really mad, I tell ya.

But you know what?

He never left me.

For as stubborn as I am, God is even more so than I.

In quiet moments (times that before the CF bomb I would have prayed) God would be in my heart and I would hear:

I know you’re mad Carmen, but I’m still here.

My reply? I’m not talking to you anymore, @$$%&! Bold, I know.

And yet, still He stayed.

In one of the darkest times of my life, He was there like a persistent Light. A Light that doesn’t dim despite the cuss words of a moody girl, who has an affinity for their use. His Light continued to shine, even when I tried to in every which way to shut my eyes and be in the dark.

As it ended up, it was in the dark, in the still quietness of the night that I began to speak to Him again.

I was lying in bed in the middle of the night, my husband Lance asleep beside me. I was nursing Crosby and wrestling with my anxiety. You see, I feared the worse for my baby. I feared the worse for his life, our life and our family. I let the reality of CF suffocate me. I let the fear control me and not the Holy Spirit.

But God was wrestling back.

I looked down at Crosby and thought about how I wanted to grip him so tight with every fiber of my being. I want to protect him and never let him be hurt. I want to shield him from pain, from sickness, from all the ugliness. The amount that I love Crosby was squeezing my insides so deep that night that I couldn’t breathe. I was overtaken by the overwhelming love that I have for my baby.

And then, suddenly, awareness flooded over me. My goodness, how fierce a mother’s love is!  Is that how God feels about me? Yes, of course, was the answer. As my arms were around my sweet baby, I realized that God is also holding me. Constantly. And He never lets go. Even when we try to wrestle away.

As much as I love Crosby, God loves me more. In fact, as much as I love Crosby, God loves him more.  I can cuss at God and turn my back on Him, and He will keep on holding me and loving me. And He will do the same for Crosby.

And so, I began praying again.

Are there times that I am still overwhelmed by the unknown of the future? Absolutely. Life has thrown us a challenge in the form of CF. There will be hard days. Days I want to give in to the anxiety again.

But, God has made me strong.

And, in the end, I cannot conquer my own fears alone. I have to turn them all over to God.  I am learning to cling to the hope that God’s love is greater and that the world is fleeting. His love is greater than my fear, my anxiety, and it’s greater than CF.
This life is a gift. My life. Crosby’s life. It’s a crazy, beautiful adventure and I want to take in every moment of it.  I don’t want to waste any more days or nights due to fear and what ifs.

And I know I need His Light, to help show me the way.

-Carmen

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