Chapter 1: He gathers the lambs in his arms and carries them close to his heart

Okay- so the OCD in me feels the need to catch you up since the last time that I posted, which was remorsefully June of 2014.  Once upon a time there was a girl named Jordan who made a satirically, yet unfortunately true post about always being asked if she was pregnant, when in fact she was not.  After June, many other events happened in the Cox family life- mundane, exciting, real life things, none of which she took enough time to blog about.  In September of 2014, we went on our first family vacation, just the four of us.  I’m pretty sure it was some of the happiest memories of my life.

We went to Branson and Kansas City.  

The kids shared a room, 

we fed ducks,

we went to Silver Dollar City,

we ate breakfast on a balcony,

we met friends at Great Wolf Lodge,

we swam and basked in the magic of watching our kids be kids.

The day we returned home, I decided to see if I couldn’t top our unbelievable vacationing experience by adding good news of great joy.  We found out that Baby Cox #3 would be coming in May, 2015.  

While we didn’t celebrate with quite the same abandon and blissful ignorance as two kids generally do when they find out about their first pregnancy, we were still excited and looked forward to our life as a family of five.  We greeted 2015 with slightly reserved excitement and anticipated some scattered obstacles- I knew that I’d have a job transition at some point in the year and we knew our life would reshuffle when Baby Cox #3 made his or her entrance.  All was good and our biggest unknown was whether our growing baby was a boy or a girl, a question we had decided to wait to find out until his or her birth day. 

So that’s the “story of us” from June until now, and now that you are adequately caught up, we transition to a dark room on January 6^th.

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I got greedy.
That was the line that kept passing through my head, amidst many other thoughts.  We’d anticipated January 6^th like it was Christmas- the day of our 20 week ultrasound.  Halfway through what was supposed to be a standard, happy appointment, my OB/GYN came walking through the ultrasound room door.  As any expectant mother knows, that’s not supposed to happen.  I even told him that- he walked in and I said “you’re not supposed to be in here.”  He proceeded to tell us that something was wrong and it was serious.  I looked at Matthew and asked “is this really happening?”  The doctor then proceeded to tell us that there was something at the bottom of our baby’s spinal cord that wasn’t supposed to be there and it was interfering with things all the way up the rest of the structure.  He pointed to some specific places on the ultrasound, but I didn’t really hear what they were.  Matthew was processing things a lot better than I was- he actually said “isn’t that spina bifida?”  Dr. W. told him yes.  I knew I’d heard of the condition, but what any of it meant wasn’t coming to mind. 

We asked if the pregnancy was viable.  He said he didn’t know.

We asked if our baby would have any quality of life.  He said he couldn’t answer that.

He hugged my shoulder and I knew that he was telling us everything that he could. 

In a flurry of events, Dr. W said he was referring us to a high risk doctor in the same building and they just might be able to work us in over the next couple of hours. They let us leave through the “sad door”- the back door that I had actually never seen in that office before, but I’m sure all the doctor's offices have, so that crying and devastated couples don’t have to walk through the waiting room where all of the happy people with normal pregnancies are waiting to do happy, normal things, like leave urine samples and get glucose tests.

So we waited in a dark room at the high risk doctor to have more questions answered. We’d had to answer a questionnaire about any potential genetic abnormalities from both of our gene pools- it instantly gave me a feeling of “whose fault was this?”  I jumped from thought to thought and question to question while Matthew’s demeanor was more content to wait until the dr could come in and actually tell us something.

What did I do wrong?  My favorite thing in the world is to be pregnant.  How could I have messed this up?  My mind raced back to late-August, early September for any haphazard or careless thing I might have done.  Too much caffeine?  Did I breathe in too much chlorine at Great Wolf Lodge?

I feel so sorry for our kids. They were SO excited to get a baby brother or sister.  We talked about it every night, they kissed my belly often, and Gavin had even offered up the names Ryan and Kaylee as baby name suggestions- very thoughtful suggestions coming from a 4-year-old, if you ask me!

We’re going to have to tell people.  I imagined a disparaging Facebook post or a never ending series of phone calls to explain to family members, or a “Did you hear about the Coxes?” type of scuttlebutt. 

But the line that kept crossing through my mind was I got greedy.  We had two perfectly healthy kids, a beautiful family.  While our lives certainly weren’t perfect, we were happy with our clumsy, happy, quirky, slightly frazzled version of it.  Now we’d gone and messed it up.  How could we possibly go back in time 1 hour or 4 months or whatever length of time it would take to wake up from this completely awful dream we were having? 

The doctor came in, another ultrasound was done.  It wasn’t a mistake.  She talked about all the things that were wrong as we looked at the projected version on the screen above.  The long and short of it was that the baby’s spine had not completely come together towards the bottom and rather than the nerve endings being encased in the spinal column, there was a little sack on the baby’s back.  The tethering on the spine was pulling down its brain, which caused different things to not form correctly,  and could eventually cause hydrocephalus, which fortunately hadn’t developed yet.  The right leg didn’t move- it appeared to be “fixed”.  There had two holes in the heart.  Phrases that I’d never cared about before like “Chiari 2” and “banana shaping” and "myelomeningocele" were used liberally, talking about my child.  It was one thing after another- I kind of wanted to say “enough already!”

But then they showed the face of a baby that was undoubtedly ours.  They told us that our baby was a girl.  I wasn’t looking at an unfortunate collision of cells that had failed to form correctly.  I was looking at my daughter.    

We left that day with glimmers of hope.  Spina bifida was explained to us in more layman’s terms.  Nothing was “fatal” (could they have picked a more gentle term to use with two crushed parents?).  There was potential that she could have a mostly normal life, but “normal” seemed like It seemed like an ugly word suddenly. 

It was surreal to leave the appointment and be expected to be able to function well enough to drive a car.  We had driven separately to our appointment.  How did the world expect us to process things like stopping at a stop light while I was also processing that my daughter’s spine wasn’t the same as everyone else’s?  We had regular things to do that night, like take our son to gymnastics.  His world was about to be rocked and I wasn’t going to dare let him miss his gymnastics class.  I cried through most of the class, wondering if the little baby inside of me would ever be able to jump on a trampoline or do a somersault.

Forty-two days have passed since that appointment and there are more chapters to tell- two medical trips at major facilities, a groundbreaking in-utero surgery, a bedrest that is forcing me to leave my children, husband, home and life that I know to take care of this little one inside of me.  I don’t mean to color it all "pretty" by summing it up with a Bible verse.  I really don’t.  This doesn't feel "pretty", but at the same time, I do have this sincere belief and hope and peace that God is writing a beautiful story for this little girl that we call Poppy.  Some days seem so, so dark and the chapters that follow this telling of Chapter 1 seem completely unbelievable to me, even as I’m living it.  At the very second that I’m writing this, I’m sitting on a stranger’s bed 612 miles away from my home.  I haven’t been able to hug my children since February 1^st and my stomach is forever scarred to look an Egyptian hieroglyphic.  None of those things are happy.  But God is still good.      

My friend texted me a verse on the night of January 6^th, as we tried to fall asleep in our new world.  I don’t know just yet if it is a theme for this season of our lives or the theme for Poppy’s whole life, but without being trite, it reminds me that God didn’t forget about us. It's a reminder that, just perhaps, He perfectly formed her in this way for a complete plan and purpose that someone else with a fully formed spine might not be able to fulfill.  I really hate feeling like I have to tie a bow around my emotions and make it all pretty, like it’s just the Baptist way to give something difficult a purpose.  And again, all of this is not pretty.  Or fun.  Or charming.  Or heroic.  But it’s our portion and it's where we are today.  

“He will feed His flock like a shepherd.  He will carry the lambs in his arms, holding them close to his heart. He will gently lead the mother sheep carrying their young. 

“Look up into the heavens.  Who created all the stars?  He brings them out like an army, one after another, calling each by its name.  Because of his great power and incomparable strength, note a single one is missing. 

“Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth.  He never grows weak or weary. No one can measure the depths of his understanding.  He gives power to the weak and strength to the powerless.  Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength.  They will soar high on wings like eagles.  They will run and not grow weary.  They will walk and not faint.”

Isaiah 40: 11, 26, 28-31

And the one thing I can say with certainty as I sit at Day 42, looking back on Day 1: He has carried us.