Fighting the endless fight

BY HOLLY KESTENIS, Staff Writer

ST. PETERSBURG – When Joanna Neeley gave birth to her daughter, only a teen herself, she was scared. Scared all the naysayers were right and she wouldn’t finish high school, that she’d amount to nothing. So the last thing on her mind, before she heard her baby cry for the first time, definitely wasn’t how she would deal with an unhealthy daughter, but just how she would deal – period.

At three months old, Jaceia Sheppard was diagnosed with a heart defect and immediately underwent open-heart surgery. Neeley thought that was the worst of it. But just before turning two, the unthinkable happened. Jaceia went into cardiac arrest and suffered brain damage due to some 12 minutes without oxygen.

“You don’t know what’s going to happen to your kid,” said Neeley who recalls playing with her daughter for hours before her heart gave out. “There were no warnings; her heart just wasn’t strong enough to pump blood to her brain.”

Doctors said Jaceia wouldn’t live past her fifth birthday, but last Fri., Aug. 22 she celebrated her sweet 16 before a crowd of family and friends at the Gulfport Casino ballroom.

Jaceia can’t walk. She can’t talk. She can’t do the things that other 16 year olds enjoy. She attends a special school where she receives around the clock care while her mother works with other children as a director for the R’Club afterschool program at Tyrone Middle.

But at the end of the day, she goes home to her family. Neeley spends her evenings drawing baths for not only Jaceia, but her one-year-old brother. She helps Jaceia’s 10-year-old sister complete her homework. She checks over Jaceia making sure she is bruise free. “It has happened,” Neeley said.

The mother of three rarely sleeps, getting up almost every hour to give Jaceia her medication. Most days she’s working off a few hours of sleep, five on a good day. There was a time when a nurse was present 24 hours a day. Now due to healthcare cuts its just 16 and Neeley is left to play nurse.

With her days filled with helping one child after another and her nights filled with being the best mom she can be, it’s a wonder Neeley could find the time, let alone the energy, to pull off the sweet 16 birthday of a lifetime.

“I was planning for two years,” she laughed. Jaceia, golden in Neeley’s eyes, is a blessing, and Neeley spared no expense celebrating not only a birthday but 16 years of stolen moments. Sixteen years of her family traveling down that rough road called life. “I didn’t want to leave her out; I wanted her to feel special.”

Although Neeley now has someone in her life, she still goes at it mostly alone. “It’s always been me and my kids against the world,” she revealed. Her family who lives in town just a few blocks away don’t come around other than holidays and Jaceia’s birthday parties. “That kind of bothers me,” she said. “It’s been bothering me for a while.”

So for 16 years Neeley has smiled and thanked those who’ve offered their help, knowing she would never call them. “I can’t rely on them,” said Neeley who has been burned one too many times when asking for assistance from others. “When you call they’re always busy.” Except on Jaceia’s birthday parties, which Neeley admits is something.

The theme was a Hollywood red carpet premiere. Neeley spent the day dressing Jaceia from head-to-toe in gold. A tiara on her head, a smile on her face, Jaceia’s moment had arrived. Neeley and her family stepped out of the sleek black limo rented for the evening and wheeled the little lady of the hour down a red carpet and into a room full of well wishers. Their cameras flashing, their hearts open to the little girl who has survived against all odds.

“I just busted out crying,” said Neeley. Christina Aguilera’s “You are beautiful” lyrics still playing in her head.  “They played her song and when they got to that chorus I lost it, then everybody else started.”

A montage depicting Jaceia’s life from birth played on a screen overlooking the ballroom. Jaceia walking as a baby before that fateful day when she would use her legs no more. Jaceia at her school, with her brother, her sister, her mom on family outings. Jaceia at the fair.

Neeley wheeled Jaceia out in the middle of the ballroom and they danced in front of the gathered crowd. A best dressed contest was held and Jaceia was queen of the ball as a soloist sang to her, eyes tearing up.

Doctors are impressed with her health, but are relentless on suggesting Jaceia go into a home. A solution Neeley refuses to consider. And as the young woman was wheeled around from table to table as extended family members reacquainted themselves with her, she smiled at her surroundings at the party held just for her.

“When they were singing the “Happy Birthday” song to her, she giggled, her eyes got real big,” laughed Neeley who was touched by the outpouring of love her family showed to a girl they hardly know. “We communicate, she understands us.”

When doctors revealed Jaceia would never be a normal child, Neeley almost took her own life. But she continued to go to church, called onto the Lord and now uses his shoulder to cry on.

“When I need the strength that’s who I turn to,” she said.

Neeley hopes her story will make a difference to those going through the struggles of raising a special needs child. She knows firsthand how hard it is to get by, to keep pushing forward and to even just go to the store with Jaceia.

“I’m not going to lie,” she confessed. “Some days yes, I want to give up. It is so hard.” But then Neeley looks at her little girl and realizes that it is her daughter who is suffering not herself, and she can no longer focus on the negative, but strives to see the positive instead.

The mom of three has learned patience over the years, to strive to be happy, to not take life for granted. “She has taught me so much,” said Neeley speaking of her Jaceia, “when she can still smile and laugh while going through her journey, what she’s been through.”

Neeley plans to continue to fight for her daughter even if the weight of the world continues to rest on her shoulders. She hopes that other parents of special needs children will take a moment and recommit to their child before putting them in a home; and those parents of children who can run, play and talk will stop and think before yelling at their kids, before kicking them out on their own.

“When you think you have it bad, someone else has it a little bit worse,” she said. “Kids, they need us, they really do need us.”

Jaceia arrived home in the wee hours of the morning, her sweet 16 birthday party no doubt playing over and over like a record player in her mind.

“I’ll go to the end of the world for my daughter,” said Neeley, a sentiment that if Jaceia could talk, she would most definitely say also.

To reach Holly Kestenis, email hkestenis@theweeklychallenger.com.