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.
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 6th.
******
I got greedy.
That was the line that kept passing through my head, amidst many other thoughts. We’d anticipated January 6th 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.
That was the line that kept passing through my head, amidst many other thoughts. We’d anticipated January 6th 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.
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 1st 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 6th, 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.
