Makinley Hope: Part One

Princess Makinley

It was May 2008 and we found ourselves flying to NYC for a consult with a cutting-edge neurosurgeon. We were desperate to discover whether our daughter Gabrielle might be a candidate for a three-stage brain surgery. A surgery that could possibly extinguish the seizures that were robbing our child of normal development.

The plane sped down the runway and lifted into the air, when a sudden wave of intense nausea swept over me.  I held 18-month-old Gabrielle on my lap, attempting to keep her calm, as I breathed deeply through my queasiness.  I began feeling better, once we reached altitude, but the same sensation again overtook me as we descended for our landing at LaGuardia.

It was probably just a little motion sickness, I told myself.  I needed to get some food.

I was ravenous by the time we reached the hotel, and after gorging myself on an amazing spread of ethinic cuisine, told Duff, “I’m totally pregnant.”.



I don’t think he believed me.


Turning our attention back to the purpose of the visit, we headed out to meet Dr. Howard Weiner.

After a short cab ride, we found ourselves sitting in his Manhattan office, examining pictures, letters, and poems that littered the walls, from so many children who had experienced life-changing surgeries.




A short, lean man with salt and peppered hair entered the room, kindly smiling and extending his hand.

We went over lots of data and scans that day, and listened to his very logical and scientific approach.

Dr. Weiner confirmed that Gabby sounded like a good candidate.  He wanted us to meet his colleague, Dr. Orrin Devinsky, that very day, before we returned to Raleigh.

We were beyond impressed with those two doctors, and by day’s end, had decided to move forward with testing at NYU.

They needed to collect lots of data to be certain Gabrielle was a prime candidate.  They needed to be sure the seizures were coming from only one side of her brain, or surgery was not an option.

Testing would require a week-long, inpatient hospital stay, to be scheduled as soon as possible.

We flew home to NC, packed our bags, and drove back up to my parent’s house in CT, the following weekend.

Duff would spend the week at Mimi and Pop’s house, with our four other kiddos, while I stayed in the hospital with Gabby.

Tuesday morning, we were New York City bound, awaiting hospital admission, when the nausea hit me so hard I began dry heaving in the car.

We pulled off at the nearest exit and my sweet hubby hooked me up with an amazing breakfast sandwich from Dunkin’ Donuts.

Nothing had ever tasted better.

I was a new woman in minutes…

but there was just no denying these symptoms.

My mind spun as I tried to figure out the complexity of how this would all work.

I questioned God’s timing.

This surgery would require weeks spent in the hospital.

I worried how a long, stressful hospitalization would clash with first trimester morning sickness.

I caught myself.

There you go again worrying about things completely outside your control.


In the medical center, I fretted about being exposed to radiation and chemicals.

The glue used to cement electrodes onto my daughter’s head smelled positively caustic.  I questioned the technician and was reassured that it was safe.

I informed Gabby’s doctors that I might be pregnant, wanting to be made aware of anything potentially risky.


I constantly ordered food from my favorite local delis to stay on top of the nausea.

This coffee-dependent mama, was now slowly sipping decaf iced coffees as her morning treat.

We hadn’t told anybody (aside from the doctors), you know, that I might be expecting.

There were just so many uncertainties in our life right now.  The idea of a baby excited me, truly it did, but I worried about how it would all work out.

What would others think when we already had so much on our plate?  Would I be seen as irresponsible?

How would a sick prego momma handle all of what may or may not lie ahead?  Would my other children become neglected?


One baby step at a time, I told myself.  First we needed to determine if my Gabby was even a candidate.

None of this was in my hands.

Testing proceeded smoothy and by day three we were ready for a study involving low-level radioactive compounds.  The compounds are injected into the bloodstream during a seizure, essentially ‘lighting up’ the seizure focus, and then images are captured.

I was reassured by the house radiologist that it was safe for me to hold my radioactive Gabby, but about halfway through the test they changed their minds, and wanted my husband there ASAP.

How to explain this sudden change of events to the rest of the family…we brainstormed?

Duff willingly became the family crier of shocking news, and grinned widely, I’m told, as my mother’s jaw hit the floor.

“Yup. Kell’s pregnant,” he confirmed, before making the 3 hour drive back into the city.

I waited with my girl until her daddy arrived, trying not to think about rapid cell division and the effects of radiation on such.  I prayed for this baby’s safety.

But when my husband finally walked into that hospital room…

his head white as snow…

completely shaven for no good reason except to shock me….

all worries fled from my mind.

I wasn’t very pleased.

And then… when I learned that my two little boys looked like Casper the friendly ghost…


Well I never!

I was fuming mad.

I know…so silly.  I can see that now.

But at the time, when I already felt like my life was spinning wildly out of control, this hair shaving thing was just the final straw.

The final slap in my face.

The ultimate proof of my powerlessness.

I exited the hospital that night, my anger slowly dissippating, and retrieved my dad’s car from the parking garage.

I began the long drive back to my parent’s house alone.

I would need to wait 24-48 hours for Gabby to clear all radioactive material from her system before I could hold her again.

My heart hurt and I was numb with exhaustion.  I didn’t want to leave Gabby but I also knew I needed to protect the unborn life tucked away in my womb.  I hated being pulled in two directions.  It was just something I wasn’t good at.

The quiet car ride was exactly what I required, time alone with my thoughts.


Crap!  I had gotten distracted…

I missed my exit.

Something you don’t want to do as you’re leaving Manhattan and completely unfamiliar with the area.

I now found myself driving through the Bronx…

in the dark…


After looking around a bit, I decided I absolutely would not be pulling over to ask for directions.

I would just keep driving until something looked familiar to me.


Finally I saw I-95, jumped onto that interstate, and never looked back.

I did not care if it was the most round-a-bout way home ever.

I did however pull into a rest area about 30 minutes later, when the adrenaline began to subside and prego hunger overtook me.

A whopper with cheese was calling my name.

And it was a good thing I obeyed the ‘call of the whopper’ that evening, because traffic would soon come to a standstill, for hours, following a serious accident on I-84.

I arrived home late that night.

It was good to sleep in a bed.

It was even better to take a shower.

The last few days of gathering data would soon be over, we would then head back to Carolina, where the waiting would begin.

We would wait for Gabby’s case to be presented at the next epilepsy conference, to a group of doctors, who would discuss her candidacy for surgery and weigh the risk/benefit considerations.

I stink at waiting.

I could only pray that we would remain joyful in hope, patient in affliction, and faithful in prayer. Romans 12:12

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