Macayla’s Story

This article was originally published in the Aiken Standard on May 1, 2011.

The Rev. Jeff Smoak was ordained on April 10. He is a 1991 graduate of Aiken High School and has an undergraduate degree from The Citadel. He attended seminary at Erskine College and is working toward a PhD.

Aiken native Jeff Smoak was preparing for a sermon at an Anderson church in March 2009 when he came upon a passage that put him at a crossroads of his faith.

“And Nathan departed unto his house. And the Lord struck the child that Uriah’s wife bare unto David, and it was very sick.”

Smoak, then a seminary student, turned his thoughts immediately to Macayla, his 9-year-old daughter, who was dying from a degenerative brain disease. A grieving father and a man of faith found himself on a cliff of doubt.

“I had to ask the question. Was my child struck? Was Macayla struck or not?”

The beginning

Macayla Smoak was born May 22, 2001. She was healthy, happy and inquisitive. By 2 years old, she was memorizing movie labels and could work the VCR. Her father remembers her adventurous spirit.”She was not a girlie-girl. She loved being outside, messing with bugs, worms,” he said.

In the spring of 2005, the Smoaks world began to change forever. It began with seizures. Doctors were unable to diagnose a cause.The family moved to New Orleans in 2005 for Jeff to finish a master’s degree in seminary at New Orleans Baptist Theological Seminary.

The answer to Macayla’s problems might even be found at a children’s hospital there.Two weeks later, Hurricane Katrina struck the Gulf, sending the Smoaks back to stay with friends in Anderson.

It all seemed to be piling on the Smoak family.

“At that point, we’re like, ‘OK, God, what are you doing? And why would you even send us to New Orleans if you knew it was coming’?” he said.

The diagnosis

Macayla’s condition continued to worsen, and medicines were proving ineffective.On Dec. 27, 2005, they received the diagnosis – Batten disease, a degenerative brain condition that would slowly deteriorate Macayla’s physical state.

Jeff and Jennifer Smoak had just received word of their daughter’s death sentence.

“Immediately, we just went outside in a parking lot and just cried,” he said.

As the days turned to weeks, Macayla began talking less and less. Her motor skills were failing her. The disease would eventually take her vision.

“Because the brain cells cannot get rid of the normal trash your cells make, the brain ends up dying over time,” Smoak said.

Some days were harder than others. Each day brought new challenges, as Macayla faced new hurdles in everyday life, such as when she would have difficulty coordinating her hands in what used to be a routine task. The Smoaks had to encourage her at each step.

“It’s OK, we’ll learn a new way,” they would tell her.

The disease did not strip her spirit. In fact, Jeff said, she became more touchy and warm.”After the disease started, we noticed a change when she was around 5 or 6, she started smiling more. She smiled and laughed when they went to Disney for Make a Wish. She just really would light up and smile,” he said.

The verse

On Macayla’s ninth birthday – May 22, 2010, the Smoaks lost their daughter.

The Bible verse that rang so personally for the Smoaks has led to a book by Smoak, chronicling the family’s journey through Macayla’s illness, both personally and spiritually.

“Ultimately, it was just a quest for me. I really never set out to write a book about it or even preach about it, because this was so personal to me,” he said.

The verse – 2 Samuel 12:15 – tells the story of the affair between David and Bathsheba, and the death of their child, with the chilling line “the Lord struck the child.”

“It is so emotionally charged. When you’re the parent of a dying child and you read that (verse), it’s a show stopper. You stop, and you have to figure that out. Or you walk away bitter,” Smoak said.

As he embarked on the journey to understand the verse and how it applied to Macayla, Smoak found himself walking into shadows of uncertainty.

“Am I really ready for the answer? That was the hard part. There were moments of fear that I’m not going to like the answer,” he said.

That said, he ultimately relied on his faith to know his questions would be answered.

“If God is all He says He is, then He can handle my questions.”

What Smoak found was a guiding light that would ultimately become the book. The story tells of the illness, of the treatment, and of the spiritual journey of the family.”God knew that we needed more revealed to us,” he said.

What he found were not just answers, but also hope, and a message to share with the readers of his book.

“That’s not the only verse in the Bible, and there’s a reason for that,” he said.

The future

Jacob Smoak is 7 years old. He carries the gene for Batten disease but will not be affected by it. His children could be, if their mother is also a carrier.

One chapter in the book focuses on Jacob and his journey through his sister’s illness.

“The boy has learned more about genetics than any 7-year-old should know,” his father said.

Jeff Smoak said he never knows when the moments of grief will surge to his consciousness. It could be when he drives past the office where Macayla did her therapy. It could be simply out at dinner.

“I took Jacob to a movie and Mexican food. He thought that was great, and I’m thinking, ‘Would Macayla have liked that movie?'”

And he still has questions for God.

“God, are you really all you say you are? Is there really heaven? Do I get to see her again?”

But ultimately, Smoak said, he finds hope and a reason for continued faith.

“There is a future here. This is not for nothing.”

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