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Amazing Grace Is More than a Song

November 9, 2013

When our dear friend, White Station High School teacher Darrell Hugueley found out he and wife Sandy were having a second child after years of frustrated attempts to give son Kyle a sibling, he knew immediately that the new baby would be a girl and that she would be named Grace.  He recalls that moment in this excerpt from his blog Goodbye Religion:

We are going to have a baby.

I reeled at the thought. Hadn’t we been trying for six years to have another baby? Hadn’t we lost at least two babies in miscarriages? Hadn’t our trusted and loving obstetrician told us it would be impossible to have more children? We’d even had my son praying for a baby brother or sister. Hadn’t we sold every piece of baby furniture and divested ourselves of all baby accouterments except for mementos like first shoes and the odd sentimental toy? And now we were having a baby? Now?

I didn’t even have time to celebrate this news. Business compelled me to leave. I hugged and cried and said goodbyes and began the longest, most intense prayer experience of my life. I prayed to my Heavenly Father all the way to New Orleans. I felt his presence seated next to me in the car. I felt his arms around me as he told me, Now you asked for a sign, didn’t you? Well, I think so much of you that I am going to give you this little life to care for and raise for Me.

For five hours I prayed and rejoiced and was lost in the ebb and flow of powerful love from God. When I got to New Orleans I jumped out of the car, ran into the hotel and checked in, ran to my room and dialed the phone for home. The phone rang, and my beautiful wife said, “Hello?”

“It’s going to be a girl,” I said, “and we’re going to name her Grace.”

There was a slight pause.

“Who is this?” she asked.

I laughed and told her I was certain it was going to be a girl so that we could name her Grace. She would forever be known as the Grace of God, God’s answer to a desperate plea for a sign. My wife said that was great, but we should pick out boy names just in case. I told her with absolute conviction that there was no need. I knew in my heart of hearts that she was going to be a girl. Case closed.

grace adn darrell

Baby Grace grew into a joyful, talented, outgoing child with the same quirky, “off the grid,” brainy wit as her father.

She celebrated her uniqueness. Grace knew she wasn’t like everyone else – or meant to be. She was a rider of unicorns.

unicorn and grace

At age 11, Grace began having severe migraines.  At 13, she experienced the first of many grand mal seizures. Grace had epilepsy. She never knew when or where the seizures would strike. She only hoped someone would be with her when she woke up – someone  who would render comfort and assurance through that space of time between seizure and normalcy known as “postdictal.” Postdictal is also the name of Grace’s blog,  where she speaks candidly about her unusual life  experiences with uncommon candor, wit and wisdom:

If any of you were born sometime around my generation, you’ll be able to recognize the show Hey! Arnold. Once, I don’t even know when, my friend and I were watching one of those famous moments when Eugene [Horowitz] crashes into something. My friend noted, “Eugene is such an optimist. He’s so clumsy and is always crashing into stuff, and he always calls out that he’s still okay, even though we know he’s not okay.” She made somewhat of a puppy face at the television screen. “Poor thing, he’s got such a hopeful spirit.”

Grace Hugueley: "I am proud to be Eugene Horowitz. And I am proud to get back up every time I fall."

Grace Hugueley: “I am proud to be Eugene Horowitz. And I am proud to get back up every time I fall.”

For the past two years of my life, I’ve been Eugene Horowitz. I trip, fall, and crash into things often, and from the outsiders’ perspective it looks like a pretty crazy ride. But to me, it’s not all that bad. I always get up when I fall, and let everybody know that I’m alright. It’s not because I’m hurt and I’m pretending to be okay just to be an extreme optimist. It’s not because it hurts when I fall down, but I say that I’m okay so as not to let my epilepsy get the better of me. It’s because, when I lose my footing on carpet stairs in the dark, the fall really isn’t that hard. And it’s because a plastic hairbrush bouncing off of my big toe is nothing to brag about living through. And it’s because a Pre-Cal book hitting my, well, thankfully that one missed, but you get my point. I started to think that maybe the creators of Hey! Arnold were sending out a sort of subliminal message to kids, that maybe Eugene really was okay. Maybe the creators were saying to the kids of the world, “Hey, just because you fall off of your bike, doesn’t mean you have to get hurt. Just because someone hits a baseball at you, doesn’t mean you have to let it knock you down.”

Grace started her blog in July 2013, days before a gifted team at LeBonheur Children’s Hospital conducted two major surgeries. The first removed a part of Grace’s skull. The second removed part of her brain in an attempt to give Grace a life without seizures. It was the kind of surgery any adult would fear. One of the surgical risks was mental impairment. Grace faced the dangers, she might say, head on.  She would take the risk, trust in God and her LeBonheur caregivers, and deal with whatever the consequences might be.  A gifted musician who loves to perform, Grace and her family prayed that she would not lose her ability to play the piano.

grace at piano

[email followers click here for video]

In addition to recording their introspections on their blogs, Grace updated her friends and family about her surgical experience via Facebook, while Darrell reached out through emails.  Grace talked about the nurses who gave her French braids before her first surgery, the day a flock of handsome Memphis Redbirds came to call, about feeling like a Conehead post-surgery, and when her dog Skye came to visit.

french braids

with memphis chicks

post surgery with puppy

Dad Darrell coveted and gave praise for the prayers that sustained the Hugueley family. He spoke about other families  from around the world who were also at LeBonheur for hope and healing. He blogged about the extraordinary compassion and dedication of the LeBonheur staff, about the nurses who commute from Wynne, Arkansas and Pensacola, Florida; the ones who kept a constant supply on hand of Grace’s favorite beverage (milk!), and the ones who brought in cake and sausage biscuits just for the Hugueleys.

The surgeries  were conducted over a two week period. The surgeon was pleased. Darrell emailed:

She has a helluva scar, and told somebody yesterday that she looked like a Munchkin that had been in a knife fight. And of course I meant that in the nicest way possible.

Grace was at home by mid-August, and on September 12th, she started her senior year – half days at first – at White Station High School. She has continued to progress beautifully. On October 15, she led Team Grace as the mascot for LeBonheur Neuroscience Institute at the hospital’s annual 5k Pumpkin Run.

Grace and Darrell pose for Team Grace at LeBonheur's 2013 5K Pumpkin Run.

Grace and Darrell pose for Team Grace at LeBonheur’s 2013 5K Pumpkin Run.

After a successful round of speech therapy for a post-surgical issue, Grace wowed the White Station faculty on October 30th with a presentation about epilepsy awareness.

The indomitable Grace Hugueley is back on her unicorn, with a message to the world that even if  life throws you a curveball that knocks you down, you don’t have to stay down. Eugene Horowitz has nothing on Grace Hugueley.

Final note:

When Grace’s doctor shared the pathology report with Darrell and Sandy after the surgery, they found something unexpected.  Darrell shared “the rest of the story” in Goodbye Religion:

We sat in Starbucks looking over the report, marveling at the extended Latin names for simple brain parts and equipment. Then we came to the cause of the seizures.

grace mriWhen the excision was removed and labeled, they noticed an anomaly; cortical dysplasia. A little group of irregularly formed nerves and tissue.

In other words, a birth defect.

The song playing at that exact moment was called “Nothing to Hide.” God pulled back the curtain on the last eighteen years and revealed that he had knit together this precious answer to prayer in the womb with a malformation of nerves. As she grew and developed in the fullness of time, this little lesion of cells caused her epilepsy.

You see, folks, this is why I have learned to never ask “Why.” It has been hard to look at my daughter’s suffering and not question why she had to go through this terrible thing. The only consolation I have gotten is talking to other people at LeBonheur Children’s Hospital who had driven ten hours to get there with an infant seizing all the way. As I would walk down the hallway of the unit I would see families and patients show suffering through the same debilitating disease with to such a greater degree and with much more fierce intensity. By comparison we were abundantly blessed.

But God had written this part of the story even before I woke up on that Sunday morning in 1995. He had started this part of my journey long before my wife ever got the first impression that she might be pregnant. It has always been part of the story, but the Master Raconteur waited until now for the Big Reveal.

I told my daughter that. I said that every person that has been touched by her story, by her smile, by watching how brave she has been; by seeing how effortlessly and courageously she has endured the seemingly unending stay in the hospital; seeing the tedious hours of testing and waiting for seizures to be recorded; noting the indignity of being tethered to telemetry and not being able to move more than two feet from a hospital bed for two weeks; all of this was so that we could stand proudly and say that God is good and that we are ever in the best hands and in the best of care.

This is the real reason Grace is truly, truly amazing.

Amen to that.

grace    pink

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