Friday, November 4, 2016

The Things You Never Thought You Would Have to Say...

On Wednesday night after orchestra practice as we pulled in to the garage, Cole asked the first of what I know will be many questions regarding the uncertainty of Zella's future.

"Will Zella ever learn to drive?"

"No," I said.  "Zella's brain is different from yours and it won't really allow for her to be able to learn that skill."

"But she will have kids, right?"

"No...but you can have kids and Zella will be there to play with them."

"Yeah!  By the time she is 28 I'll have kids and she can play with all of them!" he said happily.

And that was it.  In two minutes Cole had successfully reconciled what, for Jake and I, has been many months of agonizing over Zella's future.  He wasn't upset or sad at what we had said, but instead Cole took this new reality and seamlessly integrated it into his new dream for the future.  Cole knows that driving a car isn't everything and that growing up and getting married and having children isn't the only acceptable option either.  Each life here on earth has a purpose, and none of these lives will be lived out identically.  Different shouldn't mean better or worse, important or insignificant.  He made us unique so that we can each fulfill different parts of His master plan.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14



Saturday, October 22, 2016

Zella: A Birth Story

Zella was born on December 23rd of 2014, a mere two days before Christmas.  Being our fourth child in five years, my husband and I had exhausted our list of approved baby names and were completely stuck when it came to potential middle names.  We would soon come to realize, however, that the answer was actually staring us in the face.

My pregnancy with Zella was routine, even mundane.  I had some of the best prenatal care available first at the Medical College of Georgia in Augusta, Georgia where my husband was finishing his pediatric residency, and then later at Vanderbilt University in Nashville, Tennessee where we moved for his fellowship in clinical informatics.  As with my prior three pregnancies, I was nauseous during all waking hours up until around the 24th week, and then from there I felt pretty great.  My days were spent schlepping my other three children, at the time ages 5, 3, and 1, to their copious amounts of extracurricular activities.  It was exhausting, but it was normal.

I’ll fast forward a bit to my 37 week obstetrics visit.  My doctor easily located the baby’s heartbeat and then determined that I was already 6cm dilated.  I had all three other children anywhere from one to three weeks early, so again, this was no surprise.  This time was slightly different in that the baby’s head was not actually engaged in my pelvis as it should have been by that point.  The concern here is that if my water were to spontaneously break at home and start me into active labor (as it did the last three times), there would be a real risk of cord prolapse once that water was gone.  We determined based on this information that I would go in that evening and be induced while my doctor was on call --- a pretty perfect scenario.

That night we had a final meal with the family and then my husband and I left my mom with our other kids and headed off to the hospital.  I was willing myself to believe this would be a normal delivery, just like all of the others, but something inside me felt different…anxious.  After all, who has four boring deliveries in a row?

After waiting a while, the nursing staff was able to get us into a room and begin an IV.  I knew I would want an epidural again, especially since this was an induction, and so we waited on anesthesia.  We could hear the external monitor beeping with the baby’s heart rate and noticed instantly when the frequency changed.  There was a flurry of excitement as nurses came to try to adjust the location of the monitor, but nothing changed the strange sound of what we called “missing beats.”  An internal monitor was placed, and promptly kicked off by Zella, no doubt miffed at being messed with while in-utero.  The second internal monitor was successful, but it only served to confirm what the external monitor had been telling us --- something was wrong.

My amazing doctor looked at me and said that at this point she really couldn’t guarantee anything and felt like our best course of action was to get this baby out quickly with an urgent Cesarean section.  I was shocked.  I thought we were going to have our fourth incredibly boring and utterly safe delivery of yet another child, but not today.

I’ll skip the gory parts and say that Zella was born via C-section in the wee hours of that next morning with no real complications and two Apgar scores of 9.  She was immediately seen by cardiology and monitored for the next three months.  They diagnosed her with a cardiac arrhythmia, VSD, and PFO at birth, but by three months and after countless tests it was determined that all three issues had spontaneously  miraculously resolved on their own.

But back to that middle name…  Zella was named after her grandfather’s grandmother, her great great grandmother “Zella Jane Peel” (married to “John Quincy Underwood”).  As we sat in the hospital room on the day of her birth, it suddenly came to me.  Celeste.  This happened to be the first name of my excellent obstetrician who made that difficult call to take Zella urgently even though it wasn’t in the plan.  Heavenly…a meaning we wouldn’t quite understand or learn to appreciate for another few months.
  



Friday, October 21, 2016

Unintended Consequences

Zella's diagnosis has brought a sense of peace and calm amidst the madness of life.  Knowing that there is a name for her complex array of (many times completely unrelated) symptoms is such a relief.  And we directly benefit from her syndrome being named because it has put us in touch with a truly amazing network of other parents, all raising children with an ADNP mutation.  They are quick to share everything with us --- their struggles and challenges and also their daily victories with these incredible children.  We are *so* thankful to have them as such an integral part of our lives.

With the diagnosis have come other unexpected blessings.  Jake and I are now much more aware of the plight of special needs children and their families who struggle to raise them with few resources.  I have become far more empathetic as I listen to stories of mothers who have been forced to make heartwrenching decisions after they are told that the baby they are carrying inside of them is incompatible with life.  I admire parents who fight daily with school districts to get their special kids the education they have been promised.  Because of Zella, we have a changed perspective in how we view other human beings.

God has used Zella's diagnosis to change our hearts and minds.  The second we start to see people as merely black and white issues to be "for" or "against," we have lost.  The world is a broken place, but yelling and screaming and shouting at the brokenness or condemning the broken does nothing to lead others to Christ.  Instead, 2 Corinthians 1:4 says we are "...to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."

Although I have blogged about it before, I continue to go back to Nichole Nordeman's The Unmaking...

This is where the walls gave way

This is demolition day

All the debris, and all this dust

What is left of what once was

Sorting through what goes and what should stay 


Every stone I laid for You

As if You had asked me to

A monument to Holy things

Empty talk and circling

Isn’t that what we’re supposed to do

 
What happens now

When all I’ve made is torn down

What happens next

When all of You, is all that’s left 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars

This is the unmaking 


The longer and the tighter that we hold

Only makes it harder to let go

But love will not stay locked inside

A steeple or a tower high

Only when we’re broken, are we whole 


What happens now

When all I’ve made is torn down 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars

This is the unmaking

This is the unmaking 


I’ll gather the same stones where

Everything came crashing down

I’ll build You an altar there

On the same ground 


‘Cause what stood before

Was never Yours 


This is the unmaking

The beauty in the breaking

Had to lose myself

To find out who You are

Before each beginning

There must be an ending

Sitting in the rubble

I can see the stars
This is the unmaking

This is the unmaking

Oh, this is the unmaking 


Had to lose myself

To find out who You are



 

Sunday, June 12, 2016

Facing the Facts.


Getting what will become an autism diagnosis for your 17 month old baby girl is...difficult.

Finding out that she will most likely be severely cognitively impaired is brutal.

The thought of Zella potentially never being able to communicate with us?

Unbearable.


But while we know the statistics are bleak, our hope is in Him.