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.