Friday, March 17, 2017

I Didn't Know I'd Find You Here

A few weeks ago I was struck by the lyrics to the first verse of Ellie Holcomb's "Find You Here"...

It's not the news that any of us hoped that we would hear
It's not the road we would have chosen, no
The only thing that we can see is darkness up ahead
But You're asking us to lay our worry down and sing a song instead

Since Zella's diagnosis in June of 2016, one of my biggest fears has been that Cole, Vera, and Asher will eventually grow to resent their youngest sibling...becoming embarrassed by Zella and her behaviors that are never age-appropriate.  Her therapies are a huge time suck and she is growing more and more difficult when it comes to bringing her to events with the rest of the family.  One day she will no longer look like a toddler, and from that day forward the general public will have even less tolerance for Zella.  Intellectual disability is a four letter word, striking fear and animosity in the hearts of other human beings.

Today I realized something monumental, however.  I may not be able to convince the public at large that Zella is still a person and her life is still worth the same as my own or anyone else's, but I will not spend any more of my time worrying about whether Cole, Vera, and Asher will love her the same as they love their other siblings.

This afternoon as we drove back from Atlanta, Cole told me all about his audition.  I was shocked to hear what he said to the casting director, though.

"They asked me if I had a big or small family, so I told them our family is big.  Then I told them about Zella...that she has special needs...and that Vera and Asher and I build forts for her.  I said she likes to knock them down, so now we use Asher as the wall to the fort and it seems to work better."

They don't love her the same.
They love her more.

And that is fine with me.


Wednesday, February 15, 2017

Adulting: Special Needs Trusts and Advanced Directives

One would think that by the time you have been married for 10 years and have birthed four children that you would certainly be considered an official "adult."  Zella has taught me that, in fact, I know nothing about adulting.  This morning Jake and I spent an hour and a half at a local law firm speaking to an incredibly nice attorney about all of the things we never thought we would ever talk about...

*executors
*trustees
*guardians
*conservators
*custodians
*power of attorney documents
*child trusts
*special needs trusts

...and the list goes on.

Questions included where we want remaining funds to go upon Zella's death...since she won't have children of her own.  Or who we would like her guardian to be...and the backup...and the backup's backup...and the backup's backup's backup.

We discussed how to create Zella's special needs trust.  Any money left to her will need to be put there and specifically earmarked for increasing her quality of life, but not specifically to take care of her education and medical care (because the government will then deny her the medical benefits she qualifies for).  Clearly we have outgrown Legal Zoom...

Adulting at its finest.



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.