The Story of Neica

The last twelve months have been some of the most difficult of my life.  Four surgeries, COVID infection (was quite likely encephalopathic, but had only mild respiratory symptoms), all the rest of all the things. Too many to name here; the list might actually be endless.  Truly, I think 2021 looked back at 2020 and said,”Here. Hold my beer.”  I am so very grateful it’s almost over.

Our pastors just finished a series on the book of Ephesians.  They called the series Love Incorruptible.  One of the messages focused on the beautiful words “but God, . . .”

November was apparently adoption awareness month (per usual, am late to the party). November 20th marked the fifth anniversary of Neica coming into and completing our family.  I’ve been trying to figure out how to write about this.  But God, indeed.

The truth is, I first met Lenia and Neica in exactly the same breath. They were the only two littles on the porch at Camatin when we arrived on a warm April afternoon in 2011.  Lenia laid claim on me, and a few days later, I was overwhelmed by the certainty that she was ours.  Overwhelmed because Greg and I had been really committed to maintaining the roles of Dr. Greg and Dr. Abby, and loving and caring for all the “orphans.” We had discussed maybe being open to the idea of adoption maybe twice.  

Three long years later, we were finally able to bring Lenia “home” to Tennessee. Neica had been adopted by another family and actually came “home” the very same weekend. As things would have it, Lenia and Neica had spent their last week in Haiti together, as Greg and the other parents were at the same hotel in Port au Prince, while I was in Les Anglais for clinic.

We lost contact, we thought, because life.  About 18 months later we learned Neica was going to live with another family, potentially permanently.  The original adoption had not worked out. The new family had two sons, no daughters, and no experience in Haiti.  I reached out to the new family and offered to help in any way we could. Neica started coming to our house to play, make Haitian food, just be. She spent most of that spring break with us as her new family had to work. Every single one of us fell head-over-heels in love with her.  On November 15, 2016, Greg and I were having alone time at Pawleys.  A friend familiar with the situation called with the news that, for multiple reasons, the new family was not going to be able to adopt Neica; might we be interested? Maybe 10 minutes later (I mean, we had to at least pretend to think about it), we called back with a resounding YES.  Phone calls to the older girls and a sweet lunch with the youngers confirmed that yes.  On my birthday that weekend, I asked Neica if she would be my present. But God, indeed.

Back to 2021.  Greg and Ne went driving one Sunday in October.  She was, he reported, all over the road.  She couldn’t see.  We got an appointment with our eye doctor, Katherine Laney, at 3:40 pm Friday afternoon. Thankfully, Center For Sight has a retinal scan technology, and Neica had been in February for her yearly check up.  Her retina/ optic nerves were normal at that visit. On that Friday afternoon, the scan showed grade 3+ papilledema, a sign of significantly increased intracranial pressure and swelling of both optic nerves.  In English, that means she was in imminent danger of going blind, or, worse, herniating her brain stem and dying.  

I was at home with a visiting missionary family. Greg called me after getting to our office.  His words to our nurse were the same he spoke to me. “We have a problem.”  The MRI was scheduled for 2:00 pm the next day.  I called my dear friend and mentor, Chris Miller, who is a pediatric neurologist.  He agreed to come do the lumbar puncture that would be needed if the MRI showed no brain tumor. But God. . .

At 6:00 am the next morning, we got a call telling us if we could get to the hospital by 7:30, there would be a sedation team available for Neica, and an ER doc willing to do the lumbar puncture.  We got there by 7:30. The nurse caring for Neica, Becca O’Connor has been at Children’s hospital as long as we have. She is amazing. The doctor in charge of the sedation service that day, Bob Dickson, was one of our favorite attendings during our residency years.  The doctor who came in to do the lumbar puncture once we knew there was no brain tumor (mesi Jezi anpil anpil!), Francis Craig, is an ER veteran.  And Julie Shelton, whom we call JuJu and is part of our family, happened to be on call in the PACU and came to hold Neica’s hand. 

Neica’s diagnosis is idiopathic intracranial hypertension. Idiopathic is a six syllable word that means we have no clue why this has happened.  But. Neica does not have a brain tumor. There is medicine to help control the production of the cerebral spinal fluid.  At her most recent follow up with Dr Laney, the retinal scan showed almost complete resolution of the swelling of her optic nerves.  But God, indeed.

Adoption, no matter what, has unspeakable loss at its heart.  There is absolutely no getting around that.  The five years Neica has been with us is the longest period of time she has ever been in the same house with the same family. My thoughts and feelings around this truth are still too difficult to speak.  But God, in His beautiful Love and Mercy, really really is working ALL things together for good. The evidence of this is ever apparent, even now, as the whole world groans.  I pray for the Grace of always noticing.