Thursday, February 4, 2016

A Tale of Two Scars

My favorite things about me are mistakes. 

When my oldest daughter Harper was born, we were beyond thrilled to see that she has a dimple.  Just one.  A precious little dimple on her right check.  I remember the first time we saw it.  She had just been born and her temperature was a little low.  They told me that she needed to be skin to skin on me for an hour to help her warm up.  I was thrilled but I also couldn’t wait to explore our new person!  As I held her and Matthew went to tell everyone that “mother and baby are doing fine”, my mom was doing the “look over” of Harper and giving me a full report.  I remember she gasped and said “Jordan!  She has a dimple!”  We fell in love with it instantly.
Harper and her dimple
I was momentarily disillusioned when I returned to work a few weeks later and a pragmatic, ole Engineer informed me that a dimple is actually a tear in the muscle.  A mistake.  Simply put, if things were perfect, it wouldn’t be there. 

Which brings me to my two favorite things about myself.  Thing number 1: my freckles.  Spots.  Technically, damaged melanin.  But whatevs- I like them.  They give me character, a little splash of color on my otherwise pasty, white skin.  Truth be told, they aren’t really supposed to be there, but man, would I be boring without them.  

Thing number 2: my scar.  My “Poppy line”, as we’ve referred to it for nearly a year now.  At this time one year and one day ago, it wasn’t there.  Although my tummy was far from perfect, it was not riddled with a long scar.  My favorite thing about me was made by a scalpel (and actually by a world renowned plastic surgeon, so doesn’t that sound fancy!)  It was made as an ends to a means.  In order to help my daughter, they needed to get “me” out of the way. 


It took me a while to like it.  In fact for several months I hated it.  With the speed necessary to make the decision to offer surgery to Poppy, we didn’t have time to think through the fact that I’d have a scar for the rest of my life.  It wouldn’t have changed our minds, but it would have been something to have processed prior to one day post surgery, as I watched them peel a bandage off my pregnant tummy to view  a long, permanent line, held together with surgical glue and 31 staples.  “It won’t always look that pronounced” they promised.  Just one more thing to grieve, I remember thinking. 

But a year later, I love it.  It’s my Poppy line!!  It’s purpose in my life goes far beyond the aesthetics of what my eye beholds when I see it.  It’s a line that forever connects me with my daughter,  the daughter that was born with stitches and her own scar.  She was born, already recovering from a procedure that she’d had 8 weeks prior.  Back when she was only about 8 inches long, weighing maybe a little over one pound and had skin that was the consistency of cellophane.  The smallest portion of her lower back was delivered into the world and had 27 minutes of work to place nerves back into her body and to close an opening that shouldn’t have been there.  In fact, the opening is called her “defect”.  And what remains of her “defect” is a precious little scar and a lifetime of overcoming damage to nerves that didn’t grow in the right spot. 

We have kind of a matching scar set, which I think it pretty cool.  It reminds me of the biggest, most important, scariest decision of our lives and a day that I was actually maybe kind of a little bit brave amid a lifetime of mostly mediocre. 

My scar reminds me of a cold and somber morning, waking up at the Holiday Inn on West End in Nashville, TN.  No need to put on make up- they told me not even to wear deodorant.  I was glad I was going to be taking a nice long nap in just a couple of hours because not wearing deodorant is REALLY not my jam.  Matthew and I met my mom and went via taxi to the hospital.  It was only a few blocks, but we had to be there at 5:45 and we also had to take all of the belongings that I’d packed for the next 3 months of my life.  I remember getting out of the elevator on a floor that had clearly been designed and decorated back in the 1960’s.  It smelled like hospital and looked even worse.  Every inch we walked felt like a walk to the guillotine. 

I remember a weepy, pregnant mama in a hospital bed wearing a surgical gown and cap, sitting next to Matthew on the hospital bed.  One of the 5 Anesthesiologists that scrubbed in on my surgery came in to talk with me before surgery.  He said something like “a true hero doesn’t always feel brave. A true hero knows what the right thing to do is and does it even though they’re scared.  And today, you’re my hero.”  I know he probably says that to all of the Fetal Surgery moms, but that morning it felt like it was meant just for me.

That’s what I see when I look at my scar.  I see a day where I was stronger than I have ever had to be.   I see love, not just from me, but from Matthew who watched them wheel his wife and his baby down a long, white hallway.  He worked two jobs, held our life back in Oklahoma together and passed kids around like little hot potatoes to make our Nashville lives a possibility.  

I see patience from two siblings who could never have grasped what was going on, but simply trusted that we’d be home with a baby and we’d be family again.

I see family members and loved ones to who came together heroically on our behalf to make our lives work.  Our family bares scars that the eye can’t see, but are still sensitive places that are still healing- little hearts that every now and again remind me of the pain that Gavin and Harper went through to help bring their sister into this world.



When I look at my scar, I also see the power of an all knowing, all loving God who held an incision together for 8 more weeks and simultaneously wove and grew a baby - not just body parts, but He wove spunk, and resilience, and happiness, and a spark that I hope is there for Poppy’s whole life. 

Eight weeks later, at 32 weeks and 6 days gestation, our little woven together Poppy was born with stitches, a story and a smile.  She smiled in the operating room as the nurses showed her to me.  And her little 4 lb, 2 oz body held onto life and all that it hold for her.

I hope Poppy embraces and loves those things about her that are technically imperfections.  She will overcome a lot in her life that to the eye may appear to be a flaw, but represent unimaginable strength.  To us, she is thoroughly perfect.  To us, she embodies God’s protection in our lives, God’s provision for our needs, His shield around us, and a head that He lifted (Psalm 3:5)


On Poppy’s first Butt Day, my prayer for Poppy is that when the world sees her imperfections, they would see Christ- a Christ that heals, redeems, and gives purpose. And that Poppy's favorite things about herself, whatever they are someday, would be many and that her spirit and spark would not be dulled by one moment of insecurity.  


 I’ll lay claim to the prayer of St. Patrick for our girl:

“Christ with me, Christ before me,
Christ behind me, Christ in me,
Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down, Christ when I sit down,
Christ when I arise,
Christ in the heart of every man who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in every eye that sees me,
Christ in every ear that hears me.”



Many, many thank you's to my wonderful friend, Emily Berglund from BeYOUtiful Photography who helped us tell our story in pictures.  

Tuesday, January 5, 2016

364 days ago

Tomorrow marks the one year anniversary of our littlest baby being diagnosed in utero with Spina Bifida. 364 days and nights have come and gone since our world changed forever.  One year ago I watched as a Doctor in a white coat entered a room he wasn’t supposed to be in to deliver news to Matthew and I that we never imagined we’d hear.  A diagnosis that I’d only ever heard of by name became almost a defining part of who we are.  We embarked on an involuntary adventure that will be ours for the rest of our lives. 

When I think of January 6, 2015, part of my mind goes to a black room, perfectly symbolic of the black hole that it felt our lives were falling into.  Only minutes before I’d been laughingly joking with my husband.  We had decided to keep our baby’s gender a secret, so we had naively closed our eyes through nearly the whole 20 week anatomy scan ultrasound.  I’d brought a list of names- both genders- for us to discuss while we waited.  We both planned to go back to work after our appointment- after our customary post-dr visit to Starbucks, of course.  But now we found ourselves in a specialist Doctor's office in the darkest room on the darkest day of our lives. 
This was the last picture taken on my phone before we heard our news- it was a list of all the names that we (and by we, I mean I) was wanting to discuss for Baby Cox #3.
I recall the list of things the Specialist pointed out that were wrong with our baby.  She kept going on and on.  It started to be too much.  I remember wanting to tell her she was being rude.  “Stop talking about my baby like that!”  I remember thinking.  It was a weird disconnect, like the baby being shown on the monitor wasn’t the baby that was inside of my body.  All of our dreams seemed to flash before our eyes.

I imagine the pre-Spina Bifida mom that went to bed on January 5, 2015 with a swollen pregnant belly and a carefree little head that laid to rest on her pillow.  
Nowhere on my horizon were words like chiari malfunction or fears like hydrocephalus or urostomies.  There was a nomenclature that I didn’t need to know about, costs that I didn’t need to count, a trip I didn’t know I needed to pack for, and a depth of faith that I hadn't ever had to tap into.

Every now and then my mind starts to wander into a place that I don’t like to go to- I imagine for just a few seconds what our lives might look like if Spina bifida never entered in.  It’s a fictitious world and a place that I really don’t find it useful to dwell in.  I venture to say that the non-Spina bifida Coxes wouldn’t have a little girl named Poppy.  We would have probably chosen Channing or Piper or Morgan - all lovely names, but certainly not ours.  We’d have had a baby in late May or early June via a lovely natural child birth.  Non-Spina Bifida Coxes wouldn’t have their hearts pulled ever towards Nashville and wouldn’t have a Physical Therapist or a Urologist or a Neurosurgeon on their Christmas card list.  Non-spina bifida Coxes might live in a different house, that was part of our tentative plan anyways, and they wouldn't have to worry about whether every member of their house would be able to climb stairs or need a wheel chair ramp, they'd have just bought a house.  Non-Spina Bifida Jordan had created a “to do list before baby comes” that makes me laugh every time I look at it.  Silly items like “clean out the garage” were on my radar- not “go have fetal surgery and live in Nashville for 3 months”. Non-Spina Bifida Jordan wouldn’t have vertical scar down her belly. Non-spina bifida baby Cox wouldn’t have had purple leg braces or a zip zac chair.  I usually stop myself there because anything else feels so far away and so unclear that it takes a big imagination and thoughts that just aren’t worth having.

I am so proud that this little innocent face didn’t have a clue what was being told to us on that day.  She was just being a fetus.  She was growing imperfectly and yet somehow perfectly, all at the same time.  I’m beyond grateful to God for the road that was laid before us on that day; some of it directed in a clinical fashion by a doctor and some of it laid out only by the grace and direction of God Himself who laid it on Matthew’s heart to research fetal surgery at Vanderbilt. (side note: The place we were referred to by our Specialist denied us and we only went to Vanderbilt because of the tug on Matthew’s heart to have a second opinion lined up)

A year ago on January 6th, a lot of dreams slipped away that have been replaced with new dreams. There are verses I've always quoted and known about that now have new, real meaning.  There are songs that I've always sung that I wonder how their meaning could have possibly been anything less than what it is now.  Things that we perceived to be struggles or trials before now seem like mere inconveniences.  One of my favorite sayings is "a virtue untested is no virtue at all" (shout out to Paradise Lost by John Milton).  On January 5th, 2015, we had untested virtues.  Not because they had not been real, rather they were simply untested until that moment.  


A year ago tonight I didn’t know that I was laying my head on my pillow for the last time in such a carefree fashion.  God never asked me what my preference was- whether I’d prefer our baby with Spina Bifida or without, but I’m completely grateful that He didn’t give us the option.  I am satisfied that God, in His infinite wisdom and sovereignty knew that we could not have wrapped our heads around having a baby with a life long, life impairing condition, but He chose to bless us anyways. Truth be told, I like my scar.  I like the name Poppy.  I like her purple braces.  And Poppy has a really cool Physical Therapist.  All of those things I felt we were being cursed with on January 6, 2015 are pieces of our every day on January 6, 2016. There's a level of rawness that goes away after a year and our pre-Spina Bifida lives get blurrier and blurrier until this is just kind of how we are.  While the pain isn't gone and the struggle isn't easy, it's absolutely worth this littlest person that we get to share our lives with.  

One year ago tomorrow, I felt like our lives were ending.  I realize now that our stories were just making a huge curve down a road that had seemed pretty straight up until that point.  But that curve is our story.  As my sister Katie reminded me the today “The struggle is part of your story”.  

I look at this sweet face and I remember all those tears 364 days ago, the unknowns and the feeling of despair.  It's as if she's saying to me, "You silly mommy!  What were you worrying about?  Don't you know you're going to love me like crazy?  I'm just fine!"  

We're all going to be okay.  We're all on the curve together. 

Psalm 139:15-17 (par)
Lord, You watched as Poppy was being formed in utter seclusion,
as she was woven together in the dark of my womb.  
You saw her before she was born.
Every day of her life 
and Jordan's life 
and Matthew's life 
and Gavin's life 
and Harper's life 
were recorded in your book.  
Every moment was laid out before a single day had passed.
How precious are your thoughts to us, O God.